World Cerebral Palsy Day is today Wednesday Oct 7 2015

World Cerebral Palsy Day is today Wednesday Oct 7 2015

This is a day that in important for Bella and I.

As you know Bella and I have a rare genetic disorder called 22q11.2 deletion syndrome but just recently Bella has been given another diagonses on top of having 22q Bella has a mild form Cp. Which is short for Cerebral Palsy.  We have a very mild form of Cp with spastic limb movements, Legs that lock up and her other issues she has with 22q. If you saw Bella you would never know anything was wrong. I am not raising her to think other wise.

There are no limits to what my daughter can do.

Check out to learn more about the signs and symptoms.


Meet and Greet with Mary Madalene Yaroscavitch

I’m starting a new series on the blog called Meet and Greet.

I want to get up and personal with some of my blogger friends.

I not only get to have great conversations with some of my blogging pals but they have been more than just blogging buddies some have turned into true friends indeed.





Over the last few months of networking with other bloggers and I have made a really big connection with another Canadian born citizen who is living in Canada. Unlike me she has not moved to the Usa.

Mary and I came up with a mutual agreement to do a few guest blog posts on each others blogs, that way others can enjoy a different type of audience, and bring something new and exciting to it as well.

I wanted for you guys and gals out there to have a proper introduction and we have decided to do a few question and answer sessions so that way it isn’t a shock to see someone new on the blog.

Mary Madalene Yaroscavitch 



Mary has been a huge help in getting my blog organized.

So kudos to her for being so smart and creative in finding a way to help me understand tags and categories and getting them all set up so my blog is user friendly.  Look, Look see -> -> side bar isn’t it pretty? I’m just a bit excited can you tell ?

  Mary is also a Riki healer and has been a great friend to talk to along the way.

It’s like we have known one another for years.  Mary is a Canadian blogger pal.


Mary has help keep my spirits up while trying to organize my blog and making it user friendly.

We decided to share a bit with one another on each others blogs. 

We came up with the idea to do some blog post together. 

I was given some questions by her and she was given some questions by me.

Below is a list of questions on her blog that she asked me and my answers

Go a head and check out the answers but don’t forget to come back and read her answers.

Thank you Mary for being such a great friend!

My hope is you take the time to read her answers and check out her blog and social media sites then come right back here and don’t forget to subscribe to both or blogs so you’ll never miss a post.  The subscribe button is over there top of the page.

Questions for Mary that I asked and her replies are below.


1. If you could have any job besides the one you have right now, what would it be?

Well I do have a few direct sales business. But my main goal is to have my own business that would encompass my own handmade products – such as lotions, soaps, tea’s, healing centers so that I can practice and use my healing craft of Reiki and massage. So to sum it up a Wellness Center.

2. If you had one day completely alone how would you fill your time? Honestly I would spend my day sleeping in a bit, wake up and do a gratitude meditation. I would put on some music so that I could dance, dance like no one is watching. I like to feel the music flow through me. I would make up some light fruit and veggie dishes to snack on throughout the day and have at least a pot of tea. I would also sit in my reading nook and pick out a few books to lose my mind in. I love to learn about different religion and cultures, plus there is a never ending supply of books to read. I would do a little research and pick out a new recipe to try and make, have a glass or two of wine with dinner. Then I would go for a walk in nature. Walking in nature is peaceful. I’ve been on a few walks recently and have seen some amazing wildlife such has deers and wild turkeys, Blue heron’s flying in the sky to seeing hawks fly above as well. I would watch the sun set and do another meditation again while sitting underneath a tree with my back up against it so that I could feel the energy while connecting with Mother Earth. Hearing the sounds of the water flowing down the river cleansing my soul along the way. I would sit there until the stars came out so that I could wish upon the first star I have seen that night. It is something that I do with my girls all the time, and it isn’t just something that the kids should do but us as well as we all have that inner child that wants to come out and play too.
I would come back home and have another cup of tea and catch up on the television show called Scorpion. If you haven’t had a chance to watch it, it is a pretty awesome show.
3. What is the best vacation you’ve ever taken?
I would have to say Selkirk Ontario. I have never been to this particular spot before and it was fun, relaxing, and I had a lot of “me-time” to meditate and reflect on what was happening to me on a spiritual level.
4. What is one vacation spot on your bucket list?
Bali! And Bora Bora! Lol I know two totally different spots. Bali for the culture and traditions, and Bora Bora for the relaxation side of things. I want to be able to sleep out over a bungalow of water :) Now that is my dream. My Family vacation spot would be Disneyland, or on a Disney Cruise.
5. What is your favorite little luxury?
Massages. Yep I said it. Its being able to work out all those knots and frustration’s that my body holds in my shoulders and back.
6. What is your favorite fall drink?
My favorite fall drink would have to be Tea. I like to change up the flavor of teas to the season we are in. I do love me some pumpkin spice tea .
7. If you could rewind twenty years and give yourself one piece of advice, what would it be?
Well I would never go back in time. The reason why I say this is because every personal experience I have had, has lead me up to where I am today.
8. What is your favorite family tradition?
Our favorite family tradition would have to me Christmas Eve. On Christmas eve we have some extended family members come over for dinner and we also have a gift exchanged between us.
9. What is your most prized possession besides your family?
My most prized possession would have to be my crystals and tarot cards. I feel energized when I do a reading, and I can feel the vibrations of the crystals when healing a friend or client.
10. If you could have lunch with anyone in the world, who would it be? I would have to say either Bryant Mcgill or Eckhart Tolle, they are such an inspiration to myself and are great spiritual teachers.

Want to know more about Mary just visit her website or her other social media accounts.


If you are interested in being featured in a meet and greet on my blog feel free to contact me by email

I hope you enjoyed meeting and greeting with Mary.

Until next time my friends stay healthy and be happy!


Motivational Monday #1

Motivational Monday #1

Hey everyone,

Every Monday I have a Motivational quote to share with  everyone.

Come check out my blog every Monday for a new quote.

Here is today’s quote:

Motivational quote: “If always do what you always did, you will always get what you have always got.” -Anonymous

When I first started attending therapy sessions this has been one of the first quotes I have heard that had a powerful impact on me.

It is so often that we get set in routines and forget our dreams, desires and our own passions.

How often do we set that alarm for 6:00 am every day to get the kids up and out the door by 7:30?  How often do we sit down and watch tv every single night together with our spouse while we are going though our days  I am sure there are other things we just keep doing the same way every day because it’s comfortable.

What if we did something different today?  Today I started meditating before I got Bella up and gave myself some time and really just collected myself and our day has been a lot smoother this morning.  I might even change things up this morning and instead of having two sugars in my coffee I might put no sugar and just add my creamer instead.

I am going to post  a different quote that has helped me starting at Motivational Monday #1 all the way to Motivational Monday number #365

A different quote every Monday to jump start our week.


Moviational Monday

If you always do what you’ve done, you’ll always get what you’ve always got.










You are welcome to share any quotes I share with your friends. Just like comment or share this post with the social media sharing buttons.

Make sure you don’t miss out on any of my Motivational Monday quotes and subscribe to my blog by joining my email list on the left side bar.





Bella graduated out of Physical therapy

This has been a very busy productive week for us.

Bella graduated out of Physical therapy yesterday.

Hey I warned you it’s been a busy around here.

Every Thursday since Bella was younger she was in physical therapy for pains associated with 22q deletion syndrome and we had started Bella back up with physical therapy a few months ago.

In the course of our time in Physical therapy we have learned some great workouts and Bella has been working her legs to strengthen and tone the legs up. Low mussel tone, spastic mussels that contract and will lock up. I now know how to help Bella when her legs tighten up. I do a series of stretches with her as well as she has leg splints also known as leg braces or lovely refereed to as magic braces. wpid-img_20141007_134940.jpgOctober 18 2014 is when Bella received her cerebral palsy diagnoses and I am still learning more about how cp effects her.   Bella would cry and scream in pain at night I had to take videos of her crying in pain so the doctor could see what happen at night. Then we added backfen and had her iron and calcium levels tested I was almost sure the calcium levels had drooped after the years of it being stable but that was not the case in our situation.  After testing after testing was done we decided to start Bella back into Physical therapy.  At night Bella wears these magic braces on her legs and we do massages work out the tight tired mussels that get sore from all of the running around she does. Bella is encouraged to run around ride her bike and just play all over and play as hard as she can. That is where her bike riding with her pals come in. Of course Bella is also very active at school she loves mileage club and running. I just did a post about Bella’s fun run.


Bella no longer has to attend physical therapy out of school services on Thursdays. One less appointment to cross off our list.

We need to have a scrip for Occupational therapy so Bella can have a Occupational evaluation done. That is just a matter of me calling to get the appointment times set up.   First we are going to enjoy the rest of the month with just having play behavior therapy.  Bella has Tuesdays where we go once a week to work on emotional issues that come up just from having ADHD issues both physical and emotional as well as some sensory issues. Bella has been learning what to do when she is upset. 27 things to do when angry. It is a list that I shared with all of you earlier this week. Bella is doing so well at keeping herself together and working really hard at her listening chart that we have only a few times will she be on parents choice during the week. Maybe at some point this week I will take some time to share what our chart at home looks like in hopes that maybe it will help someone else who has gone though the same things.  We are also doing love and logic with Bella some days it works other days there just isn’t any logic but that is the case with a typical child who is strong willed. Over all Bella is having a great time with her friends after school and here at home. Bella also has a few friends at school and isn’t having as hard of a time with friends this year as she had last year. Bella did say she struggled with math and a simple fix was just asking the teacher if Bella could get some more one on one time as Bella does really well with me at home with math vs sitting in a classroom full of distractions.  This year is like night and day difference and I think all of the hard work we did last year really helped in that aspect.

Today Bella is enjoying a field trip she loves field trips we don’t often get to go out on fun adventures so it’s a special treat for Bella and she was so super excited.  Bella wanted me to go on this trip with her but I think it will be good for her to experience the trip with her friends and we can share about our days when she get’s home.

Wednesday we attend a church and Bella sat next to me colored quietly and she had to go to the bathroom but I couldn’t hear her so she was so smart she wrote I have to go to the bathroom in her coloring book. I replied please wait a minute and wow she was awesome. I had a proud mommy moment. My kid was able to communicate in a sentence mind you the word bathroom was kind hard to understand but she did it and I am so proud of how far she has come along. Not only did Bella write she read what I wrote back. I think I’m going to start looking for more ways we can do this together maybe start a mommy daughter journal.

That’s the update around here other then Adam and I had a nice lunch date at Tim hortons a few days ago. I am really enjoying time Bella is at school and days Adam has off work that we can take a bit of time to re connect as a couple.

What good news do you guys have to share with me ? I want to know what is one great thing that happen this week with you.

comment below and let me know.








Bella did the fun run at her school and ran 22 laps

This week has been a fun busy week for Bella.

Bella did the fun run at her school and ran 22 laps.

I’m such a proud mommy that I felt just saying 22 laps she need a shout out.

Bella fun run

Go Bella!!!!  Take that cerebral palsy and 22q.  okay now that is out of my system.

Bella has to collect donations for her fun run and has not collected any money yet or sponsors :(  Other then us her mom and dad.

If you would like help support Bella in her fun run at school contact me for details. Money is due I believe the latest is the 19th and so far it’s just us on her list out of 30 people.  She isn’t comfortable asking other people for sponsoring her fun run other then mom and dad I guess. So I’m here to step in and help her out to get to her goal of 45 dollars.

Bella would love to win just anything really. Bella wants one of those water bottles that can fit in the new water fountains at her school.

waterbottle fountian


Bella thanks everyone in advance for anyone willing to help sponsor her to help with fun run to raise money for her school.

If you would like to help out send me a message in a comment below or by email at

Everything I have discovered while blogging bonus offering a discount on a friends blog planner

Hello everyone,

Today I am sharing with you everything I have learned blogging and a offering.

A special discount on a friends blog planner a tool, which is a tool every blogger should use.

I just want to share I how started blogging and how I wish I would have found a blog planner sooner in my blogging journey.

First of all I have had to learn blogging from scratch. I looked on google and youtube mostly but then I found some very nice and smart bloggers that suggested blogger wasn’t the way to go and I wanted to go with wordpress. I thought about it for a while but I wasn’t sure what direction I wanted to have my blog go. I knew I wanted a simpler cleaner looking layout and I wanted to have my own wwww name on the web dot com but I didn’t know what to choose. I talked with a friend of mine and she suggested Mommies Quiet Place so I looked up some sites to find my domain name and it was there for me to pick from so I own mommiesquietplace for a small fee. How cool is that so I thought. I had to find a platform to blog with and I choose to move from blogger to wordpress but I did it the hard less expensive way and did it on my own.

So I switched over to wordpress and all of my stats had to start all over again. I was devastated because lost readers, so if your going to start a blog pick one platform and stick with it while you are at it buy yourself a domain and webhosting. That was the easy part it was the lack of time I had to put into my blog. I hope no one can remember what my blog looked like when I first started. I am so much happier with wordpress and webhosting and my domain. It also gives me a piece of mind that my content is my content.

I had loyal readers who left my email list and I am still slowly building my email list back up because they got frustrated with so many changes and I wasn’t really blogging for them I was blogging just for me to get out my thoughts and share with others in hope it helped them.

I have to start all over again this is my 3 time with a new blog.  I can’t believe I have stuck with blogging for the past two years. I am pretty proud of myself for sticking with blogging. I have had so much fun learning and meeting other bloggers and blog readers that is what kept me motivated they (friends encouraged me to keep pushing forward).

I am now set with webhosting and all the fun stuff to be able to enjoy blogging to it’s fullest. My latest achievement organizing my blog. I had a lot of tags and categories and I finally thought what if I just fixed things up a bit and moved things around to make my blog easier to read and navigate.  So much simpler to navigate my blog now even for me on my end and it’s more user friendly that way.

I still am going to tinker with the look just a bit but everything else is set and I am Finally happy with my blog.  After two years it took to learn (mostly the hard way) and now I can sit and blog a post and call it good when I am done.

Another thing to watch out for is comment spam bots. I was hacked and these little jerks took over my blog changed my password and user name. The creators of those spam bot hackers need to go die in a hole.  yes that’s how I really feel about them. I was getting messages and emails sent to friends after I replied and then those comment things were steeling my traffic my hard work was going out the window and on to their websites that were bogus websites. I was frustrated for a month because some computer nerd set up a ton of these spam bots. So I have that also under control now I feel like a badass robot spam blocker ninja. Oh I am such a nerd sometimes.   It’s a good thing I’m married to a computer nerd who helped me figure some of it out. I also have a great set of friends in my networking that have been so kind to help out here and there.

what else have I learned I am back to blogging again and I am having fun with some giveaways I learned how to use rafflecopter and get products to test and review.  A blogging perk I enjoy. Another blogging perk I enjoy is I have had so many people ask me about the rare genetic disorder my daughter and I have my blog has gotten some national attention even one person from Alaska messaged me. I was super excited to help and I am honored and humbled by the entire experience because people come to me and want to hear my thoughts and what I have to say and value my life experience. I hold a lot of the different family’s in the rare genetic community close to my heart.  I also can’t forget my blogging buddies who are so awesome at what they do I could never repay them back for all of their patience and kindness while they answered my millions of questions. Hey us newbies had to learn some place. I feel that after two years of blogging I have some more then just the basics down and I am still on a high after kicking those spam botts to the curb.

Now I am on to planning my blog post and wow you are going to love the resource I found and the lovely lady that I connected with named Vanessa.  I wish I had found a blog planner sooner or even thought of the idea of a blog planner when I first started blogging.

I met Vanessa in one of my blogging groups and once I connected with her I knew this blog planner was going to be a great resource tool for other bloggers to help with their blogs.

Vanessa created a Mega Simple & Everything Blog Success Planner that includes EVERYTHING a blogger needs to plan, post, promote and PROFIT.

It has some great resources and details on how to plan and promote your blog.  That seems to be what I wasn’t doing how are people going to read my blog if they didn’t know I’m on line. I have been doing it all wrong it seems. So now I have the skills and tools that help me organize my blog post and plan my themes better.

For more information on the Mega Simple & Everything Blog Success Planner  or to order your own copy click on the Etsy site and check out Vanessa’s Etsy store.

 I was also told by Vanessa that I can give readers a $3 off code here -> BFFLOVE ->

Here is a table of contents that I think would help you decided if the blog planner is right for you to get.

table of contents blog planner

blog planner success table of contents



4 week simple and everything blog success planner plan promote post profit cover page and what it looked like on my computer.



The links and social media sites to Vanessa’s blog which is going to launch soon


What tools have you found the most helpful when it comes to blogging ? Let me know in the comments below.


27 things to do to cope with anger-Anger tools and Techniques for children

Anger tools & techniques

Anger tools & Techniques 27 things to do to cope with anger

27 anger tools & techniques

I’m giving you a tool kit that Bella learned this week in therapy and passing it on to you.

  As you know Bella has a rare genetic disorder called 22q deletion syndrome. Bella also has a mild form of cp.

I know when I was first diagnosed with my disorder that I had all kinds of anger it’s part of the stages of acceptance. I really wish I didn’t have to go though a nervous break down when I was first diagnosed way back when I was 22 go figure right. The year I was tested positive with 22q I was 22 years old.  You can read more about that in my other blog post.

On to Bella and her learning and understanding about how she can cope and handle the things that come at her with this disorder and man is she a trooper. I can not even type these words with out crying just a bit of how proud of my daughter I am for how far she has come along.  It has been with the help of a lot of specialist and doctors and therapist mine and now hers.  Yes Bella is only 8 years old and sees a therapist she is so strong to be able to just sit and play and tell someone who she can trust besides her mom and dad all of the feelings she has about herself some of them break my heart of the things she feels and says at 8 years old. Other things make me wonder what planet is my daughter on and she’s so silly and says the cutest things and her personality is really starting to shine.  Even though Bella is strong willed and stubborn as I might have mentioned once or twice before I feel so glad she’s able to get some coping skills at a young age.

I wish I had parents who cared even just a little bit of how I felt when I was growing up maybe that is why I am so passionate about making sure she get’s all she can before she’s a adult and coping skills for anger is a tool we can all use I even use these skills.

I had a friend who made a comment about my post that I shared on Facebook and I loved her reply so much that I had to make a blog post about it and share it with my mommy friends. 

My friends reply after seeing my post from Bella’s therapist this week.

“What if the educational system wasn’t so hung up on grades and funding? what one thing that might help stop so much bullying some times I think regular classrooms with regular kids should have this as their regular curriculum. I think it’s coping skills for all of the emotions that get tossed at these kids every day while at school.

(AND we ALL need to practice a little more “I feel” in favor to “I hate” …every little bit counts -& with every bit of effort on our part, the Holy Spirit gets a better toe-hold, a better opening to move in …if we allow its guidance to be our persuasion) “

  This last part was the reply my friend had.

Imagine if we equipped our children with even more tools every little bit we share with them isn’t going to stick and work.

Trust me I am the master of trying new products and programs that might work with our child. One year it was 1,2 3 magic and it worked for a bit then she cough on to my tricks and developed some of her own to get her way.  This year  we are trying love and logic but we combine the two approaches and wow the little bit of difference just giving a child a set of skills that us adults need to remember to use.  How often do we say things with out thinking about how it can make someone else feel? How often do you think kids do that when we are not around and they are having interactions with other kids on the play ground. You know the kind of interactions I am talking about, I don’t want to play with you today I want to play with so and so. Or how about I don’t like your hair you poopy head. I mean kids don’t mean what they say to one another they can be mean one day and their best buddies the next day.  Once children start school they are basically people trying to manage in day to day life just like us adults are.

The only thing I think I would change is prayer should be the top of this list not the last resort.   Once a parents thought process is off a prayer to re center and calm can make all of the difference. If praying remember pray with the right wording and emotions and leave it up to God after that.  If prayer isn’t your thing find your mantra or center or what ever it is you need to do to realine your thought process.

 Giving my daughter a list of coping tools to use when she’s upset instead of just ignoring the behavior has made things go a lot smoother not perfect but easier to manage.  There is nothing more important then a relationship between a child and a mother (parent figure) and allowing your child to pull out a coping skill instead of bottling up that anger is only going to make your bond with your child stronger. 

I feel that if we teach our children at a young age how to cope with our feelings and frustrations they will be able to handle what ever comes at them with a little bit of self respect and in turn help others with some of the tricks and tools they use.

My friends asked about what number 25 was? it’s called move the wall what move the wall means is you push the wall with your hands over your head and legs stretched back out pushing the frustrations away.

I sit and type this because I didn’t have any coping skills until I was almost 30 years old. I am 32 and just finally picking up on coping skills I should have learned as a child if I had parents who were involved and cared that’s another post for another day I guess.

I think I have given you enough to work with this week.

So enough talking from me. Now it’s your turn!

I want to know what coping skills or tools do you use when you are angry? what coping skills or tools have you given your children ?




Leg pains and 22q


Hello everyone,

As you know every Thursday after school Bella has Physical therapy. Bella attends physical therapy to take part in her treatments from the leg pains she has at night. Bella wears leg braces aka leg splints get’s massages and stretches.  All of this has helped plus iron has also helped. Bella has limb movement disorder at night her leg tremmers and she ends up in pain with legs that get locked up. The past little while Bella has been playing hard with her buddies outside and riding her bike has really helped her too.

Bella blog


Tonight we are almost finished with Bella’s pt appointments. In just a few short weeks Bella has 25% range in motion in right ankle and 15% range in left ankle.  Bella has not had much leg pains if any latley since we started treatment for them with the leg braces.

Leg braces and duck walking to help Bella’s range of motion. Just a few more sessions if Bella continues to not have as much leg pains at night. This week was a great week just a bit of leg pains. Bella didn’t even have knots behind her knees this week. Bella will start back up with Ot if we can find after school hours. So proud of my girl and how far she has come along.

We still need to keep the leg braces on to prevent her from getting leg pains and she has had a great time as you can see attending her appointments.  We are almost done with physical therapy. We also had to get shoes for Bella with arch support and that has helped as well. Bella also has gym shoes that have arch support.

As you can see in the photo below Bella shoes are pretty cool looking. They are pink, purple and green all of Bella’s favorite colors.


Bella is taking part in her schools fun run

This year Bella is going to be taking part in the fun run for her school.

Bella asked that I send a email to all of our friends and family members.

Consider this your invite to help out.


Everyone knows how much Bella loves millage club and fun runs. Any chance Bella get’s to run she loves it.


Please contact me if you would like to help sponsor Bella.

Do not leave contact info on the comments section or my social media sites. Just simply send me a private message with how much you want to pledge and name and number where I can contact you to follow up to collect donations after Bella does her laps. you can pledge per lap or make a donation.

you can also email me at


I know I don’t see everyone in person so I thought mentioning it on my blog would be a great way to get the word out to the friends.

I will have the pledge card on me so if you are interested in sponsoring Bella with pledges for her fun run just ask me and I’ll be glad to add you to the list.

Donations are going to be needed  Oct 2ed after she does her run.

Bella is ready for the run and is excited to get her laps in.

we have 30 spots to fill out on her card and no donation is too small.

Bella would just be excited that others besides just her mom and dad are supporting/sponsoring her for the fun run.

Bella just has our name down so 29 more names and pledges to collect.








creative arts festival this Saturday in Otsego Michigan


Otsego Michigan, Events, Creative Arts festival, Parent to Parent, Local support group for parents with kids who have special needs, Sept 25 and 26, Lots of great fun.

Hello everyone.

Please don’t forget creative arts festival is this Saturday! Grab a hotdog or two while your there great prices good food at .

Learn about support services parent to parent can offer. Also find out about a local support group starting up for parents of kids with any kind of disability.

Bella Adam and I will be at a booth in support for Parent to Parent of SW MI to help spread the word of services parent to parent offers as well as providing information of the support group that is starting up in Allegan for parents of kids with special needs. The parent to parent booth will be set up outside at the very fun and kid friendly hotdog place right here in Otsego.
Come and bring your kids little and big kids.

There is a great play area for kids to play in and run around.
Then check out the rest of the fun stuff going on during the Creative arts festival.
We look forward to seeing everyone there.

I love Fall and Coffee

Hello everyone,

The leaves are starting to change colors and it’s the weather for hot coffee vs ice coffee.  At least today is a good day for hot coffee. Michigan has had a very warm start to the fall.  Fall colors and just the weather is my favorite time of year. I know winter will be here before we know it but I am enjoying the days of Fall. I am excited Bella is back in school and is doing well. I am excited that I finally have time to write some blog post for the fall.   Fall blog post seem to be my favorite type of post to read now I get to be a fall post writer.  Blogging has been such a fun journey but a even more important journey has been the journey to a healthier me.

A journey to a healthier me has been one of the hardest things I have had to do. I have been told I need to give up my love for coffee.  I love coffee more then just the average person.  As you can see coffee is something that has always been around no matter what was happening. I also like to have a daily cup of coffee. Don’t most moms? I mean I can’t even function with out at least one cup of coffee a day.

As most of my friends know I have had a hard time giving up coffee. The doctors told me the acid flairs up my GERD reflex symptoms and gasteropareses.   I have had to sleep with a wedge pillow at night in order to prevent acid from coming up and I end up chocking in my sleep. It is rather scary but I have had my symptoms mostly manageable.    I have cut back a lot of the heavy syrups, sugars and creamy coffees and have been having one cup of coffee a day. I find that I have had a lot easier time with my symptoms with just one regular size cup a day. Vs a fancy coffee drink that I love. I am also saving calories this way as the fancy drinks can have up to over 400 calories of just pure fat, sugar and carbs in one cup. 1 cup has that many calories, I’m talking about Big B’s, Starbucks and sighs Tim Hortons. My favorite coffee of all is Tim Hortons. As you know I was born and raised in Toronto and Tim Hortons is a Canadian coffee company.

I have a pretty nice coffee and tea station that I wanted to share with you guys.  Adam and I have worked very hard on our kitchen over the year and it’s starting to look great. We have a pantry next to the coffee station with a microwave area and table next to the coffee station.

I also have a wonderful collection of my favorite coffees that I drink. I still have coffee but I don’t have any where near as much as I once used to.

I do have a Pinterest board full of coffee love so this is a post of my favorite coffee in honor to coffee and for coffee lovers every where.  If you read all the way to the end of the post you will see my board called coffee love.

Here is a photo of my coffee and tea station and also my Pinterest board where I can drool over the coffees that I love. I also have been wanting to have a coffee themed kitchen and decorate my kitchen in coffee signage. Adam did say I was free to decorate how I wanted. He’s such a good supportive husband he even brings me home coffee on his way home from work sometimes or we go out after Bella get’s on the bus and we have coffee dates.  One we even made coffee mugs for a anniversary gift.

886523_10152672993590375_383374530_o My husband made the 22q mug for me one year for our anniversary we had a date at a ceramic shop and the other one hidden behind it is the one I made.

Adam and I blog


WP_001168I would love to decorate my kitchen with coffee signs like this one.

2014_02_20_00_18_46 I used to have a Tessimo but now I have a Keurig because with the Tessimo the coffees were very limited in flavors and the price was little too much to justify the cost of a cup of coffee every day. Espresso was just not something I wanted every day.  with the Keurig the many different flavors and prices are easier to find in stores.

Amanda coffee2

I wake up with my coffee station every morning.  I can have a nice cup of flavor coffee in a matter of seconds.

Amanda coffee

Of course what is a coffee machine good for with out my favorite cup of coffee from Tim Hortons.

I have enjoyed using the Keurig I prefer it to a 8 cup coffee pot because I only drink one cup a day anyways.

What good would a coffee post be with out sharing some of my favorite coffee board that I have on Pinterest.

Feel free to follow my coffee board, follow me or even re pin my post to a coffee board of your own.

I am a official coffee addict.


Mine is just a basic Coffee with Hazelnut creamer, two sugars and Tim Hortons coffee in the Keurig.

In the comment’s below what is your favorite coffee drink ?


Did you know Mommies Quiet Place has a Fan page ?



Hello everyone,


Did you know Mommies Quiet Place has a Fan page ?

Bella doing Ot and Pt exercises.

Bella says come check out our Facebook page and follow our journey.



I have a great month of post for you to check out over on Mommies Quiet Place Facebook Fan page.

Every day there is a new post with either questions for my fans or videos shared from my YouTube account.


Bella loves making Youtube videos on my phone.  See here ->

Bella idea was to share her Pony videos.

We would love for Mommies Quiet Place to grow right now the fan page is at 550+  feel free to share, like and be interactive with each of the post.

If there is something you would like me to share on Mommies Quiet Place fan page send me a message

Check out the Fan page right here.



Sweet Potato Bisque-My favorite Fall soup

Sweet Potato Bisque

Sweet Potato Bisque


I was talking with a blogging pal of mine and I confessed my writers block to her as to why I wasn’t active in any of the groups lately and my friend terry suggest I blog about my journey to a healthier me.  So that’s what I am doing I’m sharing my favorite Fall soup recipe with everyone.

Sweet Potato Bisque-My favorite Fall soup I can hear it calling my name now.

I shared my sweet potato puree on Instagram and I had so many people ask me how did I make the yummy looking soup and I thought why not blog about a healthier me and the soup.


I have been diagnosed with gasteroparises and I had to find some soups, smoothies and such that I really enjoyed since I have to stay on this  “diet”    My Lifestyle changes have been going on for almost two years now but I never really blogged about what I have been doing to be healthier I’m just totally used to blogging about Bella’s medical journey I forgot to share with you guys some things I might find helpful to you. I forget others read my blog sometimes then I see my stats and I am reminded so I can’t forget to share good stuff with everyone too.  I have been eating healthier so I don’t have so many symptom flair ups. I wont list the flair up symptoms here  but it’s not pretty. I also have hitial hernia and I was told the hernia was so massive that I was not a candidate unless the doctor could find a throat specialist who could also work on me during surgery.  I have cut down drastically on the amount of meds I am on and I have been active and eating right (until I go out with friends and socialize that is) One other option I had was loose weight.  How does a 180 pound 5 foot 2 women loose weight when I have attempted and failed more times then I can count.   At first the diet was awful my husband was eating white castles, Pizza you name it and I’m over hear drinking down green smoothies like they were going out of style. I was not happy about this new lifestyle one bit I have moments where I feel so isolated even if I am in a room full of people because usually they are eating things I can’t.

I had to have something with some more flavor and I didn’t get enough calories with just the smoothies alone. Infact on the smoothie only diet myfitness pal told me I was only getting 800 calories a day. I wasn’t working out during the time either.  This past summer I signed up for jazzercize and started to really buckle down on the eating stuff.   I now work out with a jazzercize group 3 times a week and I have been feeling healthier. My arms are starting to show some tone and my back is standing taller and straighter which takes some pressure off the hernia. I work out with a low impact dance routines and some cardio (okay a ton of cardio) I think I am the one who is the youngest but also the largest in the group. I also think I am the one who sweats the most.  I just keep plugging away and going. Sure there is a small fee every month but it’s something for me and it has had many benefits including helping with not only my physical confidence but my inner confidence.  I also have lost my first 5 pounds.



Ready In


What you will need is:


1/4 cup butter

2 large sweet potatoes, peeled and chopped

3 large carrots, peeled and chopped

1 apple, peeled, cored and chopped

1 teaspoon salt

1/2 teaspoon ground cumin

1/2 teaspoon chili powder

4 cups vegetable broth



Directions are:

  1. Melt the butter in a large, heavy bottomed pot over medium-high heat. Place the chopped sweet potatoes, carrots, apple, and onion in the pot. Stir and cook the apples and vegetables until the onions are translucent, about 10 minutes.
  2. Stir the  ginger, salt, cumin, chili powder, paprika, and vegetable broth into the pot with the apple and vegetable mixture. Bring the soup to a boil over high heat, then reduce the heat to medium-low, cover, and simmer until the vegetables are soft, about 30 minutes.
  3. Working in batches, pour the soup into a blender, filling the pitcher no more than halfway full. Hold down the lid of the blender with a folded kitchen towel, and carefully start the blender, using a few quick pulses to get the soup moving before leaving it on to puree. Puree in batches until smooth and pour into a clean pot. Alternately, you can use a stick blender and puree the soup right in the cooking pot.
  4. Return the pureed soup to the cooking pot. Bring back to a simmer over medium-high heat, about 10 minutes. Add water as needed to thin the soup to your preferred consistency.

I  want to know what is your favorite fall soup? comment below and don’t forget to subscribe.










Life update! (where did the summer go?)


Hello everyone,


I hope the first week of back to school we as great as ours had been.

Where did summer go? I want summer back please!!


This month I am gearing up for fall blog posts.

I wanted to share with everyone some of the fun we had this summer.


I used to call post like this life updates.

I know I have not been posting on Facebook and this is where my statues are going to be going for now on or they will be up on mommiesquietplace fan page.

I had a lot of questions from friends about what the Ripsam’s did for the summer?

This post is sharing my updated overview of summer.


Many of you remember that the staring of summer Adam and I decided to leave the church we were attending for a while until they got their stuff pulled together. That was the first of many things I had cut from my routines. I had way to much on my plate. One of which I did was I was a sectary at the church I took notes for the pastor.  When the pastor left I had no pastor to take notes for.  The other issue was Bella is 8 years old and there was no kids other then Bella who attend that was Bella’s age. Bella is 8 and in Christan faith that’s about the time kids start to understand the concept of baptism and bible study scriptures in children’s ministry.  There has been no church in the area that has met our need for Bella to have a Sunday school lessons so we started to do some on our own at home mini lessons I put together. It does not fix the issue at hand but I know she’s getting some of the good stuff basic teachings of do on to others as you have done to you kind of thing.   Then seeking of a new church has stopped for Adam and I and we have been doing our own thing for a while now until our church sells their builden and starts meeting some place new.   I don’t think it’s about where you attend church that matters. I think it’s about connections and experiences with each other that matters. As I open myself up to new experiences and places I have a deeper understanding of spirit but a more complex understanding of religion and it’s practices. I might just start blog post about my own studies to help me keep track of all I am learning.

Then we did other fun things besides exploring the neighborhood.

As a blogger I get to test out products and I hosted a few party’s both offline and online.  Remember me saying this summer was busy with doing fun stuff close to home.

I also was ask to help host a thrive party who knew dyhadrated chicken was so healthy convenient and yummy. I met a lady during ladies night and I just allowed experiences to form connections and one thing after another happen and it has been a wonderful journey so far. 

Another fun thing I did was I signed up for jazzercize again another connection from ladies night and boy am I getting a good cardio work out I even lost five pounds I am feeling healthier and made some more friends. 

Something I did was I stepped WAY out of my comfort zone and I attended a speakers conference made even more friends. I learned how to share my testimony and hard story I was given advice and told I had many stories that I could write. I might just write some of those stories on my blog. 

 We had lunch tea party with mad hatter for a wishgrated scavenger hunt.  This summer it has been about connecting with others and branching out.

Bella also has a penpal now two infact. One who was the mad hatter who Bella is going to draw some pretty pictures for her doorm fridge mad hatter is a busy college student now. 

Another penpal is a girl about Bella age who also has 22q and lives in Alaska. If you would like a pen pal just email us at for more information.


Bella and I had a few U OF  M trips, to see Bella’s doctors.   One more trip to the U of M is coming up soon in October. We had a list of recommendations for Bella to follow up with as well as a list for the school to follow up with. I am in process of setting all of that up and getting a lot of help with Bella’s Iep this year. I even have a training to attend here in town at the library and then after I get to talk to Bella’s advocate about what we should do this year for Bella school issues.

Bella learned how to ride a bike. Bella blog

Bella still has training wheels she still kind of freaks out when the bike tips to the left or the right.  Bella made a bike crew of friends and has been playing outside a lot this summer she rather ride bikes and stay close to home then to explore this summer and I was okay with that. 

 Adam and kids were all included in the mix we had fun at parent to parent volunteering our family for a few of the events. Adam is a parent liaison for Allegan county now and is helping run a group for family’s with kids who have disabilities we meet every Tuesday at a church in Allegan one we haven’t been to before.  

Adam and I have been so blessed sit on the board for parent to parent made a lot of new friends and connections in Kalamazoo and Allegan this summer even right here in Otsego. It has all been and one awesome learning experience after another. It really puts life into perspective when you meet other parents who are also familys with special needs.

The summer highlight for our family was a nice Bonus No ER trips this summer at all.  

Last summer we went to the movies and Bella threw up all over the movies and vows to never eat pop corn again. This summer we haven’t been able to get her to go back to that one movie theater she threw up at but she was willing to go to another one and we saw a few great movies my favorite was of course the Minions.  

With the multiple doctors and specialist we have manage to stay on top of any illness and had a great summer relaxed and stayed close to home.  Now we are focused on having the family back on routines for back to school. 6:00 am starts our day and 8:00 pm ends our day.   We had a few issues with getting Bella out the door and I am going to be making a blog post about morning routines that work and haven’t worked for our family in hopes it helps others. I have a lot of great post for October I think October is my favorite month of all time. Bella really enjoys trick or treating and this year she wants to be Joy from that silly movie inside out.


Tuesday after school Bella has therapy and Thursdays after school Bella has physical therapy for her mild form of cerebral palsy her legs really need some rub downs from her knots behind her legs and she has braces she wears at night.wpid-img_20141007_134940.jpg

I also need to say

Thank you for supporting mommiesquietplace and helping us spread 22qvcfs awareness.

 Together we wore pink and blue…
Mommiesquietplace reached over 1,114 people and has reached the milestone of over 500 likes on mommiesquietplace fan page. 

I am looking forward to hearing from all of you.

How did your summer go?

We have a winner for the Neo cell giveaway

We have a winner for the NeoCell giveawy. I was going to have the giveaway run for a few days but I decided to run the giveaway the old fashion way where the first person who comments wins. It was a lot easier and less hassle for the people who entered.


Terri merci is the winner for the NeoCell giveaway

If you would like me to host a giveaway for you here on my blog send a message to

Thanks for reading stay tune for more great info about rare genetics parenting health and lifestyle reviews and giveaways.


#Win $50 worth of NeoCell or the Appletini and Collagen Sport. @NeoCellHealth products for healthy skin, hair and nails! #giveaway and #review

Disclaimer:  I am participating in this giveaway however NeoCell is responsible for prize fulfillment. NeoCell is the sponsor and will be awarding the prize to the winner.

Any questions after reading my review or entering the giveaway feel free to message me.

If you would like to sponsor a review and/or any giveaways email me

I did receive both products and tested NeoCell Beauty Infusion Refreshing collagen drink mix Appletini flavor and I tested out Collagen sport ultimate recovery complex in Belgian chocolate I was able to truly test out both products for a month before putting this giveaway on my blog. All opinions are 100% my own. This post does not contain affiliate links.  Thank you to NeoCell for contacting me.  It it has been a pleasure I enjoy product testing, reviews and sharing giveaways.

#Win $50 worth of NeoCell or the Appletini and Collagen Sport. @NeoCellHealth products for healthy skin, hair and nails! #giveaway and #review


I was given some time to test out two products of my choice after being contacted from NeoCell. *Blogging perks*  I love the sports recovery drink and the Appletini beauty infusion because it means no pills to take in order to make sure I have minerals and multi-vitamins that I need after a work out.

I doubt I have any issues with looking younger maybe when I get closer to 40 I am 32 now.

I’m looking for a product that can help me recover after I finish Jazzercize work outs.  I want to share with my readers something I found that taste great.  My friends know how hard it has been for me to loose weight so this summer I joined Jazzercize.  I have been working out three times a week with a great group of ladies dancing in unison with them and they are kicking my butt into shape.  Jazzercize is a combo of  dance moves and low impact aerobics which I think are either going to get me into shape or kill me I’m not sure which yet.  I love it and I feel so sore yet so great after it’s kinda addicting now. I never want to miss a day.

I have lost my first 5 pounds and I feel my body is toned up in areas.   I drink a ton of water while I work out in fact a few times I had so much water intake I drank two 1 liter bottles. I sweat a lot when I work out.

I want to thank NeoCell for contacting me.

Thanks to NeoCell I have a Appletini to look forward or a yummy Belgian chocolate smoothie to make for after my work out.

Most of you know I am a huge sucker for chocolate and of course I found Belgian chocolate sports recovery drink on NeoCell’s website. They also make a multi vitamins pills but I prefer liquid not only does liquid absorb better it’s gentler on my stomach. In the past few weeks  my hair has been getting a lot of complements.

My work out friends have walk up to me and tell me how much they like how shiny and healthy my hair has been looking. I can’t say much for the nails because I keep them short. I always have kept my nails short.   I don’t know if it is my working out or the drink mixes after my work outs or a combination of both that have been helping me with weight loss but I finally lost 5 pounds. I have 50 more pounds to go.  After loosing the first five pounds and having people out of the blue tell me how much slimmer I am starting to look pushes me to keep working out and drinking my drink mixes.

Please raise your hand if you would like your own chance to win and give it a try.



Win 50 dollars worth of NeoCell, or Collagen sport ultimate recovery complex and Beauty Infusion

Win 50 dollars worth of NeoCell, or Collagen sport ultimate recovery complex and Beauty Infusion

Giveaway dates: Starts 9/11 Ends 9/20

Open to residents of the Continental US 18+
One set of entries per person.

Prize: One winner will receive the chance to choose $50 worth of NeoCell and NeroCell ship to them” (US only)  or the Appletini and Collagen Sport.



Winner has 48 hours to claim the prize before another winner is selected.

All entries are optional, and chances of winning depends on the number of entries.

No purchase necessary, void where prohibited


Enter the Giveaway by commenting on my blog.

A simple old fashion way because the HTML didn’t work for the raffelcopter I had.

The first person to enter will win.



Good Luck everyone



VCFS Awareness 22q11.2 August 28 2015 wear pink and blue

Hello everyone.

I wanted to answer some of my blogging friends who have asked me how they could do their part in spreading awareness for Bella and I and the disorder we have.

Now is your chance to help promote something that effects both Bella and I.

Helping others who have 22q vcfs and I want your help to bring awareness that adults and children have this disorder and no two people with this disorder are effected the same way.   That is the message I need to get across.

VCFS Awareness 22q11.2 August 28 wear pink and blue.    I want the usa to also take part if they are not all ready doing so.

Friday Aug 28 is wear Pink and Blue in support of VCFS 22q around the world.

This is what Bella and I have. I have been living with this genetic disorder for 32 year years and raising a beautiful girl named Bella


Bella 8 years old with VCFS 22q deletion syndrome and mild spastic cerebral palsy

Amanda Ripsam 32 years old with VCFS 22q and gasteropareses

Amanda Ripsam 32 years old with VCFS 22q and gasteropareses

Today I want to share the below post from the VCFS FACEBOOK Page

wear pink and blue on Friday Aug 28th 2015

wear pink and blue on Friday Aug 28th 2015

Use the image of the puzzle piece for your profile photo on Twitter and Facebook to help spread awareness.

Very sad news from America – VCFSEF (VCFS EDUCATION FOUNDATION) is saying “Good Bye”
It is with sadness that the VCFSEF’s 22+ year era of sharing knowledge and hope is coming to a close. But as the quote below states, new experiences await us all. Thank you to all who have contributed to this worthy organization.

Founded in 1992 by Dr. Robert Shprintzen along with a small number of dedicated families and professionals, the “EF” has provided information, resources, and networking opportunities for hundreds of individuals, families, lay people and professionals, alike, for the past 23 years from all around the world (France, Spain, Italy, UK, Africa, Asia, Australia). We owe a debt of gratitude to our founding director,

Dr. Robert Shprintzen, (a.k.a “Dr. Bob”) for his vision and tireless clinical, research and educational efforts. Even after his tenure as executive director came to an end, he served the Foundation in an advisory role helping the “EF” to maintain international connections, support state-of-the art research projects and provide social networking opportunities through our annual international scientific meetings. To this day he continues to share his expertise about the syndrome through the Virtual Center for VCFS. Dr. Shprintzen has figuratively, literally, and “virtually” touched so many of our lives. We cannot thank him enough for his ongoing commitment to individuals, families, and the professionals who are involved with those affected by the syndrome.

In 2004 the leadership torch was passed to Dr. Shprintzen’s long time, respected colleague, Dr. Karen Golding-Kushner. During Dr. Golding-Kushner’s tenure, the Foundation expanded its presence in the world holding international meetings in France, Italy, and Australia. Dr. Golding-Kushner’s diligent oversight of the VCFSEF resulted in the creation of a website, regular newsletters, and informational brochures about VCFS translated into multiple languages. Dr. Golding-Kushner continues to provide guidance to families through the Virtual Center for VCFS.

In 2011, the proverbial torch was again passed to the very competent hands of Dianne Altuna who, as the third executive director, expanded the educational aspect of the foundation by providing webinars on relevant topics with cutting edge information for lay and professional people on a wide variety of topics. Under her leadership, funds were established to support the learning and social networking needs of young adults with the syndrome through regional meetings and social events. (Via”


  I had some readers ask me what were my experience with the VCFS foundation over the years.

 I am sharing the above post because I wanted to express my desire to still continue to bring awareness. It was about 10 years ago that I had discovered I had 22q11.2 deletion velocardiofacial syndrome DiGeorge syndrome. As you see all of these names were on the FISH test that I took to discovered that’s why I wont change the name for others convenience. After my siblings were tested positive my parents were tested too and then my father was tested positive for VCFS all test minus my step mothers came back positive.  

I was tested because she does not have 22q12.2 deletion vcfs  DiGeorge syndrome but I did. Same father different mother. Was the reasoning to have testing done on me.  My father was the carrier. There is huge debates on weather or not this can be passed on from one generation to the next.  There have been family’s who I have  chatted with online even back then who have only had one child tested positive or one adult tested positive and none of the other family members had it.  It’s kinda like a nasty game of Russian roulette.   There is always a 50/50 chance. There is even a 50/50 chance that I could have another child with out the disorder or have a child with the disorder.

At the time I was part of the online community there was nothing on adults who were older then 19 years old. I have searched and then found some friends who are well beyond my age who I have developed virtual friendships. There was a chat with some Doctors and it offered encouragement and support over the years and I am forever grateful to them for passing on their knowledge because with out them I would be lost I wouldn’t know what to look for when it comes to how it effects me because physically the only thing different with me is I look younger then my age and I have stomach issues.  I also had a very high risk pregnancy when I had Bella.  I was 24 when I became pregnant but I knew I had this disorder since I was 21.  My husband has been my biggest support we have had our ups and downs but he has stayed with me though my illness and health. I am always finding out new things when I go to the doctors. 

I know what it comes to look for when it comes to Isabella because of my siblings also having it. My 6 year old brother passed away and he too had it. I have a half sister and a half brother who also have it who are in their teens now late teens who will be entering adult hood. There symptoms were sever as a child but over the years have gotten better with time and care.  My father shows no signs other then he recently had a mild heart attack.  I am almost sure my grandfather had it as well but he was too stubborn to get tested so we will never know if his heart attack was do to his other health issues or a genetic link. I don’t get to talk to them do to the relationship with my father so I can’t tell you much more about that here on my blog.

  I have had Bella seen by a heart specialist 4 different heart specialist to double check and she has been discharged each time healthy as a ox just like me while when it comes to heart issues. We also have multiple minor issues like she has a mild form of spastic cerebral palsy and I have gasteropareses I have just been diagnosed 2 years ago with my stomach disorder but I have been living with the knowledge I have had 22q11.2 deletion VCfS which is sort for velocardiofacial syndrome.  This syndrome also effects everyone so differently that is why it is important that awareness is given. Knowledge is power. 

Aug 28th is VCFS 22q11.2 awareness day and my desire is for anyone who reads this to wear pink and blue and if you have me on Facebook or twitter tag me with VCFS 22q11.2 awareness showing your wearing pink and blue. 

I would love to have VCFS 22q11.2 trending on Twitter.

Change your profile photo for a week to the puzzle piece

Wear pink and blue

No you don’t have to donate to the foundation or even to my blog.  I don’t blog to earn a income any ways.

Just wear Pink and Blue and take a picture to support us on Facebook and Twitter.

tag me in it if you like and say hi

Are there causes you like to help support and spread awareness for ?  That I can help return the favor if so let me know in the comments below.

Thank you everyone for all of your encouragement and support since I have started blogging about our medical journey.

Love Amanda

Bella loves the snacks I get to review. I save them for times when we are on the go. Quaker Chewy granola bars and the flavor of Girl Scout Cookies

Bella loves the snacks I get to review.  I save them for times when we are on the go

Quaker® Chewy® granola bars and the flavor of Girl Scout Cookies®.    A BzzAgent campaign in exchange for product testing.


Disclaimer:   I received the granola bars free from Quaker®! and BzzAgent for product testing purposes.


The people at Bzzagent thought I needed two of the same kind to test out. Perhaps for the larger size family that I have. My husband step kids and my daughter all wanted to get in on the package I received for free in the mail. Every time they see a Bzzagent package they try to claw their way past me and grab my mail. My family is up to speed on what company’s send me the best stuff clearly they are Bzzagent fans just like I am.  I have to be sneaky and beat them to the mail box.  I had to hide my granola bars other wise the kids and hubby would have eaten them and I never would have gotten a photo to put on my blog. They are used to Photo first then snack time.

Thursday Bella had Ot and Pt assessments just in time for back to school.

Bella has an IEP and is mainstream in a regular classroom. Ot and Pt services are part of her IEP but there are medical issues schools can not touch when it comes to aspects in this area. Educational vs medical which is why we have medical OT and Pt outside of school. So far we have lucked out and have apts for after school hours. Maybe this year will be easier on all of us working for Bella.  In the photos below Bella is in action as she tumbles and flips. We have homework all ready which is to stretch her hamstrings and to have Bella work on her abs to help her core strength.  In order to make car rides to and from doctor appointments snacks are very helpful.  We also scored some snacks for back to school with a product Quaker girl scout Thin Mints mint from ‪#‎Bzzagent‬ and ‪#‎Quaker‬  wanted to share a preview for our loyal fans and blog readers. I do hope everyone has had a great summer so far.

What goals do you have for your kids when they go back to school this year?

Or goals for Bella this year is to get her to eat more healthier snacks. Like these great tasting Quaker Girl scout Thin mint

Here’s a picture of Bella enjoying her granola bar while we waited for her to finished with Ot and Pt therapy we have back to back doctor visits and 3:45 was the same time we usually have a snack.





Bella the biggest fan of Quaker in our house. Bella would eat the entire box if I let her. I received two boxes of thin mint granola girl scout bars in the mail for free in exchange for my review. The granola bars were great snacks for her Ot and Pt doctor appointments.


Bella doing her Ot and Pt exercises.



Bella doing Ot and Pt exercises.

Bella doing Ot and Pt exercises.


I received two of the exact same flavor of Quaker chewy Girl Scouts Thin Mints Granola Bars each box had 8 granola bars. I would have loved one flavor of each box but maybe next time they will do that for me. I also didn’t get any coupons with my package to share with my friends.  The Quaker chewy girl scouts thin mints granola bars tasted great.  My Bella said she loved the Quaker chewy Girl scout thing mints granola bars. There was a really small amount of mint flavor and it tasted more like the Quaker chocolate chip bars then the thin mints but that could be do the the mild mint flavoring. Perhaps they didn’t want to over power people who were not huge fans of mint but like just enough and that’s where I fall in. The Thin Mint Granola bars were perfect for me.

5 out of 5 stars from all of us Bella says it deserves 6 stars.


I am excited to announce that Quaker Chewy Girl Scouts Thin Mints Granola Bars are currently available nationwide and Quaker Chewy Girl Scouts Caramel Coconut Granola Bars and will be available at Target and select retailers starting in August 2015, released nationwide in January 2016.  Each eight-bar box of Quaker Chewy Girl Scouts Granola Bars is $3.29.

For more information about Quaker Chewy Girl Scouts Granola Bars, visit, or follow the brand on Twitter @Quaker.


Liebster Award

Liebster Award

Liebster award
Liebster award


The author of the amazing blog, had messaged me to tell me that she has nominated Mommies Quiet Place for the Liebster Award!

I love her blog it is a blog about her journey with her weight loss.  I too struggle with my own weight for health reasons I love how honest she has been and forth coming about her weight even when there have been times some not so nice people make comments but the beautiful thing about owning your own blog online you can ignore those comments and send them in the trash pile.  It allows for more time to focus on all the people that do love her blog.   Alicia is an inspirational women with a body image message to get across to women every where.

Do you want in on a secret ?

Alicia and I met online. I know who don’t I meet online? yes, that’s how I met my husband but I’m rambling on and I want to tell you about my blogging pal Alicia and the crazy talent besides blogging that she has.

I have my beautiful Mommies Quiet Place logo designed by Alicia.

Shush. She didn’t even want credit for her work that’s the secret. I’m bragging about how amazing her work is.

  I told her I would tell my buddies on my Facebook about her so I gave her the heads up on this one before and I did do a blast to my friends on social media on who designed my amazing logo when I had my logo put up to the world wide web.

Here is my before that I did

youtube art some of you liked this but I couldn’t read it easy and the photo was some stock photo I found online.  My colors were off and just didn’t fit well with me I wasn’t happy with my art work even though some of my friends liked it.

Here is the beautiful logo that she came up with after chatting with me and getting to know my likes and what my blog was about.  Alicia did this


and this


Never in a million years would I have come up with a logo so beautiful and bright and meaningful to me. Alicia got it and she get’s my quirks.

The 22q is nicely tucked into the purple flower and the colors are to represent healing and the hands are mine and Bella’s.

I even love the very soft yellow in the background.

If you want a logo made too I’m sorry to say you’ll have to message her because she does not do this for a living.

I know right ?

 Alicia says graphic design is not her main passion it’s just something she’s good at and enjoys as a hobby.

I understand that because photography is a hobby of mine I used to be passionate about it then I discovered blogging and helping

others brings me greater joy.

Here are my 5 nominated blogs. Congratulations to you all!


# 1 

Jennifer knight Bales ( remember my buddy who told me I should sign up for a speakers conference this is her blog)



Adelee Russell  A friend I met at the SpeakUp speakers conference we were in the same track group


Marielle Altenor    A blogging friend I met

#4 Lisa Favre

Lisa Favre A blogging friend of Marielle


Tessa Koller    This is a blog suggested by  Jennifer Kights Bales.


I want you to know that you are all winners in my books even if I had not mentioned your blog. I had to think of a few off the top of my head who I knew would also fill out the forms and blog

With all of that said, I have chosen to accept this award!  accepting it does come with a few conditions and rules.

1. Answer 10 or 11 questions about yourself. (These were posted by the wonderful woman who nominated me and you can find them, and the answers below!)
2. Nominate other bloggers to receive the award
3. Create a blog post!
4. Link to the blog(ger) who nominated you
5. Nominate a small group of bloggers and create a set of questions for them

Honestly I find those 5 things simple enough! Some people think this award to be nothing more than chain mail, however to me that isn’t it at all. I write to not only share my feelings, thoughts and opinions, but to reach out to others. Being nominated for this award means that someone was touched by one or more of my posts, and that is all I could ever ask for.

When I first started blogging two years ago a sweet blogging pal of mine nominated me before but I couldn’t think of any other blogs who had less then 200 subscribers.

I also thought it was a chain letter and I wasn’t ready at the time for others to see my blog.

Questions for me…

1. What got you into blogging?

 I started blogging, honestly, because one day I was fed up with my health and wanted to help others be more proactive in their own health care treatments.  People in support groups online didn’t know what to really say to an Adult who has a rare genetic disorder. I was like a myth to them. I had those jaw drop uncomfortable reactions from them that I usually get from people when I tell them I am 32 years old.

Started talking to a lot of moms and  thought they might be easier to talk with but some of them didn’t want anything to do with me they were only interested in hearing about Bella and how her health is what she can do or not do.

Being the weird girl and being told it was a bad thing.  My motivation comes from being in a hopeless place and knowing the pain and stigma and I want to share my first hand personal experience so no one else feels the pain of being isolated and not fitting into the groups were suppose to fit into. I have discovered were born to stand out any ways we are created unique and wonderful.  I just hope to have helped a few people even one person to know they too are not alone. That there is hope after hopelessness.   I love sharing stories of inspiration, compassion and offering support while trying to find my own balance. I enjoy writing product reviews and blogging allows me to share my goodies I find with my friends. I know it really does not fit into a categories but neither do I and I am ok with that.   I have supportive husband and friends who keep me going in blogging. I never really have wanted to give up blogging. I have had bang my head on the key board moments but I love a good challenge don’t you ?  I enjoy proving to others I can do things they think I can’t.

2. How did you pick your blogs name?

I was chatting with a friend from High school named Shavonne and she said hey why not call it mommies quiet place and I was thinking that’s perfect my own quiet place on the internet and with both said ya.  So long winded Facebook status with updates about Bella’s appointments and my health journey as they have a place right here in the mommies quiet place blog post.

3. If you could go anywhere in the world, where would you go and why?

  I would go to Toronto, Ontario, Canada because I want to see my friends but I have a lot to do before that can happen. I’m immigrating to the Usa and it’s been a long painful process. Yes even for someone from Toronto.  There for I have some restrictions and traveling is one of them.

4. What do you hope to accomplish with your blog, or your blogging goals?

I hope to accomplish a publish book when all is said and done with my blog. When I am done posting blog post I will never know but the journey hasn’t stopped and I have been blogging for three years now. I just keep growing and improving. I hope to have more readers subscribe, like comment and share. Maybe someday make a few blog post go viral. I also would love to have some more campaigns I enjoy testing products and writing reviews I have applied so so many and the company’s have wanted 50k monthly readers and over on my blogger blog I was almost half way there. I can’t even imagine all the work that would take to get there.  I am slowly trying having fun making connections and meeting new people all the time.   I am in envy of any blogger who has a large following.  Just spreading the word about rare genetics and other types of syndrome that are out there as well as the one Bella and I have and sharing the information that comes with first hand knowledge if it has helped others then I have made my blogging goals.  I also want to do more blog hops and blog link ups I would love to host link ups and blog hops I even would love to do some guest blogging and have others guest post on my blog.

5. Describe yourself using 3 words, but nothing about physical characteristics!

Determined, passionate and resourceful  I do better research then the FBI.

6. Who was your role model growing up?

I have to say Ms Fields was a teacher at the catholic school in Pickering Ontario I attend. lady who saved me from the abuse I endured   Do you know how difficult it is to find someone with the last name of Fields on Facebook!  All I have to go on is a last name and a memory of her face of what she looked like.  She had help me get out of the yuck I was in during my childhood.  I don’t think she even knows the impact she has had on me.

7. If you could pick 3 singers or bands to have perform at your house for a private concert who would they be and why?

Havoc And Bright Lights
Alanis is a Canadian who is dual citizen of both Canada and the Usa. That’s been my goal all these years and I would love to talk with her about her experiences.  Alanis has I would love to attend  a work shop in Big Sur, CA, USA Esalen Workshop. I also love how she is a advocate and is someone I grew up listening to.  I even got to see her when she was in Toronto a few times for Much Music awards. ah teenage years were the best for me and I always had a Alanis song playing.  If I was to ever get star struck talking to someone she would be it.   With trauma workshops, healing a speaking I didn’t know she did all of this too.    I probably would pick her brain for hours with questions if I ever got the chance to interview her and then hear her sing I would love that.   okay head is out of the clouds now.

 Never Broken

 New York Times bestselling poet and multi-platinum singer-songwriter Jewel explores her unconventional upbringing and extraordinary life in an inspirational memoir that covers her childhood to fame, marriage, and motherhood

If you have read my story on my blog you will understand why I love Jewel and I can relate so well. I would love to have a inspirational memoir published some day.

P!nk in this month's Marie Claire Magazine!

My friend Alicia also put pink and I am also going to keep Pink on my list because is another singer I grew up listening to in my teens.  I love how fearless and confident she is and that is some of the same value I would want Bella to grow up watching someone strong and fearless and is confident the world needs more of that.


8. What is something that makes you smile?


Bella riding her bike pushing though her leg pain at night only to continue to keep riding she just got it this summer and we didn’t think we would be able to afford a bike until Christmas because of back to school shopping and supplies and all that fun stuff.  My  Bella always can find ways to brighten my day and make me smile even when she’s getting in trouble. She brings so much joy to both my husband and I.

9. What is your strongest childhood memory?

My strongest childhood memory is not so nice to talk about I was tutored as a child and neglected by my parents.  My strongest memory is grandma and grandpa always being there for me.

10. Do you prefer a home cooked meal, or going out to a restaurant?

I home cook meals at home with the family but I really enjoy going out to eat with just my husband we don’t get much time to actually go out to eat alone together with out a kid interrupting us.  We really enjoy having date nights.

Again thank you everyone for supporting Mommies Quiet Place! I hope you enjoyed learning a bit more about me, and got to see some really awesome new blogs!

I have a subscribe button now and you can like comment below or share.

Thank you for reading

A list of questions for the friends blogs I have tagged.

  1.  Tea or coffee?
  2.  What’s your all-time favorite book?
  3.  Have you met anyone famous?
  4. What’s one thing that you collect? and tell me about a favorite piece in that collection.
  5. The internet, cable & satellite TV, cell services, and every computer, DVD player/VHR, movie theater in the entire world are down for a day. (Basically no major electronic entertainment is available.) How do you spend your day?
  6. What TV show do you wish they’d bring back (or never ever cancel)?
  7. If money was no object, what’s the first thing you would buy?
  8. What is the most exotic food you’ve ever eaten? Where did you try it? Would you eat it again?
  9. What are you most proud of in your life so far?
  10. How do you stay in touch with friends and family?

Soft healthy clean hair free coupons and sample from Neutrogena and Bzzagent.

I got it free  Neugrogena  Anti residue shampoo   I got it free

I got it free
Neutrogena Anti residue shampoo
I got it free


I received a free sample product and coupons from BzzAgent or Neutrogena



Every girl has to have a great hair day.    Bella and I had to just open the boxes we get in the mail and when open our mail today we received our sample product shampoo from Bzzagent and Neutrogena

I think I was a little more excited about this mail call then Bella was. Bella was a great product tester she loved having her hair wash but said mom it smells like daddy’s shampoo.  Bella was so right but we both agree it works better then what we had in our shower currently.


coupons were a 1.50 off each product. I have 3 1.50 off  to give to some friends of mine.  I chatted with some friends who wanted to try the shampoo after seeing my Facebook post and they too thought it reminded them of hotel shampoo.


Product-  Neutrogena-The anti residue shampoo worked really well on mine and Bella’s hair.

I only have one issue, wish it smelled like a girly shampoo or had no smell at all.

You need to know before you buy this that it smells like a hotel shampoo.

However the shampoo works wonderfully left mine and Bella has clean hair that is soft and shiny but we had it up for our photo.  should have left our hair down.


I’m going to go and look and see if there is an exact same shampoo from Neutrogena perhaps maybe one that smells less like hotel shampoo.



#GotItFree  #Neutrogena  #BzzAgent

I am not afraid of my truth any more I will not odmit pieces of me to make you comfortable.

Hello everyone.
I have been keeping to myself lately. 
I have been using my blog as a healing journal, medical journal and sometimes just writing what ever comes to my mind.
I want to share with you guys something that has been tugging on my heart strings but I have not been brave enough to speak up about it until now.
I have a lot of people asking questions this week,  my emails have been flooded.
With VCFS awareness week approaching . I am not shocked
I was so honored to have someone tag my husband on Facebook to get a hold of my attention about a medical binder.
That’s why I shared the medical binder post with you guys.
There was also a question if you guys have a blog and share info to support others why are you not in support groups ?
I want to open up to you about why I am no in support groups online.
I feel some of you need to know the ulgy truth behind some of the madness that is involved when others get together to try and promote a cause with different agendas.
It’s not because I think I am too good for you all.  Infact I miss so many of my friends I have made. I need the support and guidance when it comes to helping with my daughter. I am in one group that is it and it’s the only group that has someone actually monitoring it for the entire group as a whole to support one another like how it should be and I applause this group. For not allowing some other foundations to take over.
I also want to let everyone locally know that I am not involved much online groups because I am infact busy raising my child she keeps me on my toes and I come online to unwind not deal with other people’s issues I have enough of my own. This blog is where I point people who are looking for some guidance.
It’s the type of people experience I have run into while I was starting out on my journey in support groups.
There are some trolls in support groups we all know this but that’s not bad enough I had experience tolls. Hey it happens when your a blogger.
I have also seem to have met some people only one agenda to join those groups.  It’s to bash the syndrome the first stages of having a new diagnoses is anger and I got sucked into to play therapist with some friends and I lost a great friend of mine because I was having a struggle watching her experience stuff that she was keeping stuck in.   Sometimes people like to stay stuck in hopeless situations because it’s comfortable. That’s not what I am about. I will not odmit pieces of myself or my story to help others feel comfortable.
This is the message I have taken away from the speakup conference I attended (NOT 22q related by the way) But a crash course in public speaking it was so wonderful to hear so many hard stories and I wasn’t the only person out there sharing my hard story to help others and to help myself heal.
I have been blessed to meet other adults who have lived with 22q11.2 deletion but some were to busy trying to convince me I have exactly the same symptoms they have this or that and I started to take things hard and I started to feel isolated even more then before I joined the groups.
There are a few sour grapes that ruined me going to support groups online because the people who have been around for years have hurt me emotionally then when I had my own child I was treated like the plague.
when I was suppose to be in the groups for support as a Adult I was left out of the loop, missing out on memos when it came to writing our stories and also there were others who are only trying prove they know more then the next and also take what you share or write and use it against you in banter with others to prove their points.
Even experts don’t know what to do with us Adults to help guide us on our path. I am forever greatful I found U of M when I did.  Bella has been thriving.
As for me and my health I am watched and stalked on line but only a handful will talk to me.
It’s not that I don’t want to share and help or even be a friend it’s just I’m not sure how much to share or to trust because those I have trusted have taken my words and have twisted them and used them to call others and tell others not to talk to me.
How do I know this others have done the same when it came to them telling me about others I took it with a warning to share this .  leaving names out but I think people can figure out who they are because they know who they are and what have been doing.
They don’t want the fact that I as a adult have been around in 22q community longer then they have that I have talked to expert doctors and people who have lived with this disoder longer then I have who are older them I am who I am forever greatful for their friendships and advice but they are all shut down when they speak up about how they feel.
The power of a blog I all out in the open now.
Go a head and chat about me I am so confident in who I am and what I have that nothing and no one is going to break my spirit. Go a head and judge even my own family does.
My experience and knowledge scares others and after they hear my story I make them uncomfortable.
This week I found a quote that says I will not odmit parts of my self for others comfort.   My hope is this helps others not feel so isolated like I have.
Thanks for allowing me to vent on my blog and for reading.

Michelle Padilla is the host of the Awareness show

Michelle Padilla is the host of the Awareness show.

Spreading awareness for 22q advocate Michelle Padilla. Check out her Radio awareness show that she host.

Spreading awareness for 22q advocate Michelle Padilla. Check out her Radio awareness show that she host.

You can expect to learn about different causes and how you can show your support!  tell us your causes and she will put them on the air.

The Awareness Show with Michelle Padilla broadcasts every Thursday from 3 – 4:15pm PST.  >


Do you want to show your support ?

Drop Michelle a line letting her know Amanda from sent you.

check out The Awarness Show  on this link right here every

In addition, new artists and bands can submit their material to Michelle and potentially setup an interview!

The main goal is to promote the 22q-11/vcfs.

Michelle loves to play 80s and 90s music while making her guests feel right at home.

Co-hosts of the Awareness Show occasionally include Zeke, graphic designer Rebecca Gairbay and social media manager Maxi Rodriguez. Co-host Melissa Diaz picks the songs for each show.


Do you want to listen to the show check her out right here >

22q Awareness

Meet my buddy who is an advocate for others who have 22q we have a ton in common besides both of us having 22q we both love Starbucks

How to make a comprehensive binder system detailed to keep medical records in for multiple doctors visits-22q

How to organize a medical binder

How to make a comprehensive binder system detailed to keep medical records in for multiple doctors visits-22q

How do you organize all of those doctor notes you get from the doctors offices after the visits? How do you keep track of the labs/test results and follow up notes? How do you keep track of all of the questions you want answered ? My personal favorite question is how do I manage it all?

I plan on doing more posts to help others who are dealing with medical health issues.

Bella sees one of each type of medical specialist. It feels overwhelming trying to remember who is who and what doctor ordered which test and which lab went were and who prescribed the medication if you lost or tossed away the med bottle.

My binder always tags along with me to doctor visits and so does my Bella. It comes in handy for grandparents to see, as well as her daddy when they take her to appointments. I am always the one that likes to make sure I’m at each appointment. I’m forever losing all the numbers and appointments I need.

I have DiGeorge/22q/VCFS as well. Organization in life is key. To help us cope if my world isn’t organized I kinda feel lost don’t you ? even with out a deletion ?

The reason why this was stared was so that we don’t forget to send in those referrals and to make sure Bella is seen by which doctor and keep track of which doctor visit is when.

Adam and I we have our calenders synced with each other. Google plus calendars connected with our gmail emails has been a wonderful time saver. Thanks to my It techy hubby he loves helping people fix computers and that’s what brought on our system. He was just as lost as I was in the beginning when Bella was born.



Even though I am a adult who has the same disorder it’s a different ball game when you are raising a child with the exact same medical condition you have but her having different symptoms then I have and not having any of the major issues associated with 22q such as a hole in her heart or a trac tube. I was left in the dark not clicking in with the 22q mommy clicks or the Adult groupies.


We still have a specialist for almost all areas of her body.

From head to toe we have had a different doctor or specialist in the field look at Bella and most of the time in aw and wonder. Most of the time confused as to why she even has  deletion and how that happen ?

I have my fish test results as well as hers in my binder in order to explain it in simple terms to educators when they are open to listening to the ideas and yes I use pictures too when they allow me. That’s another blog post for a ranting type of blog this is not one of those post.



I have my own doctors visits and have tests ran every few months.  My husband needs to have a place to find all that info if something were to happen to me and I have to have help in some way.  Kinda like a emergency back up plan.

I don’t know where anything is you say?

You can call your doctor’s office and ask the nurse to print off a bunch of your visit dates and ask if she can print off any tests ordered.Make a binder for each child.  Decorate it and make it personal. Make it something the child can be proud of to toot around with them when they travel to doctors visits.

22q is NOTHING TO BE ASHAMED ABOUT AFTER ALL YOU DID NOTHING WRONG.  If anyone says other wise they are in the self hatred denial stages of grief and that too is for another type of blog post.

Organize each file in the binder by doctors name labed on the folder where the little flat piece is where you can write names.

Our binder out grew from the binder the dempster foundation sent us after we posted our story on FACES of 22q.

I will no longer use this binder any more to tote around but instead be using it myself for my own appointments.



comprehensive binder system detailed to keep medical records in.

wpid-img_20140910_160547.jpgWP_001193Do you see where the sides are bending a bit that is the part that isn’t working for us. After all of the doctors visits we have it started to pile up. Yours will too.

I also keep the business cards  and pamphlets in there of services each places offers so if I need to look back I can say oh we been here before let’s go back. I also am able to keep maps and directions as well as pens and note pads along with stickers to keep Bella distracted so I can chat with the doctors with out being interrupted by Bella a million times.


I put the notes by doctor and inside the folders I use the yellow ones.

I then sort folders out by doctors and inside arrange papers by dates and times visited and what why they were seen.

Knowledge inside the folders I might want to show Bella when she’s older, or use for a book or even use in a legal battle. Who knows It’s there in case.

I use the cheap boring binder kind for now but you can buy what ever floats your boat.  On the outside I take each sticker after Bella’s visit and put it on the outside of the binder. I even decorated it with mommies quiet place to bring up conversations about my blog.

I call the stickers Bella get’s after her visits her bravery stickers and she can see how many times she has been so super brave and how often.

I do this for other things as well but this system works like a charm after I tweaked it to our liking. Now my husband can look in the folder if a doctor office calls him or I and say oh that’s when this was done and this is why it was done. It also has a spot for us to communicate back and forth so we can both have our questions read to the doctors during visits even if one or there other can’t be there when we can’t be there at the same time with Bella.

Often I go to the appointments alone using medicade transportation and I use the number on the back of the card to get transportation to and from doctors office visits yes even to Ann arbor and if we need to stay the night we use children health care services to help with the cost of hotel stays.  yes transportation can pick you up to and from hotel and hospital and back home again. It has to be done in a organized manner. Which is where this planner and binder come in handy. I also have added a daily planner for those moments when my cellphone dies I have a nice back up of a old fashion paper copy.

Another reason to keep track of a medical binder is:

If you have ssi you’ll be grateful for it because reconsideration for ssi comes up and they ask you that kind of stuff like when was the last visit to this or that doctor; names and address for each doctor. You wouldn’t want to waste time flipping through your phone book. It makes going to appointments easier too, since you can bring along a note book and jot down notes before you leave; as well as after-care instructions.  Let me tell you how easy it is to pull out medical reports to back you up during a IEP meeting and explain exactly why your child needs this service or that service.   People often get denied because of not having the correct information that the workers need to put in the system. Trust me people these workers mean well to help us but they are clueless as to what 22q deletion is it’s not a dx code at all you need to tell them it’s digeorge syndrome, velocardiofacial syndrome ect. You can’t just have a deletion to get approved you have to have a specialist who treats the deletion to keep approved.


I sure hope this helps everyone!

I am more then happy to respond to any comments or questions you might have for me.

leave a comment below.

If this post has helped you feel free to share it, like it and comment.

I hope you have a great week everyone.


Play therapy starts today for Bella

Today we start our journey in play therapy for Bella.

I will do my best to keep you up date on how successful play therapy is.

It’s similar to talking it out therapy but it focus on the child’s interest to get them to open up.

Finding the right kind of therapist on our medicade insurance hasn’t been easy.

Not many therapist who are alternative kinds of therapist who are not drug pushers work with medicade.

My biggest concern with Bella has been how having ADHD both emotional and physical has effected her mentally.

Kids at school try their best to help show Bella how to do things but that should be her teachers job and her teacher this year is going to have to step in when kids do this

When the kids who are Bella’s age can do things she can’t it makes Bella feel stupid she has told me.

My kid isn’t stupid I have had her tested she is average intelligence.

Kids are trying to be helpful but at the same time helping someone can be so mean and isolating and Bella feels like she can’t fit in with the girls in her class.  I don’t know the other parents to help with this issue because I didn’t grow up here in Otsego. I don’t have the funds to put Bella in Dance, Sports or anything that cost over 50 bucks per month.  Bella isn’t in girl scouts or any other type of thing other then going to doctors appointments. Part of that reason is because I can’t drive and my husband works so many hours and during the hours of practice were going to have to keep up with her standing doctors appointments. Kids look at her like she’s the weird one and don’t invite her to things.   She has come home asking can I go to so and so’s party and I will ask where’s the invite and there isn’t one. She knows I know and I explain kids are mean sometimes to brush it off because you dont want to play with them anyways. She has no issue socializing with the boys however and that’s great for now but what will happen in the future when girls start to have sleep overs and Bella is getting left out.


I’m excited to learn how to manage and cope, but most importantly teach Bella some skills she can use that will be a great asset to her for the rest of her life.




I was interviewed by The Joy Blog- Real life stories

One of my favorite interviews was with Lana owner of The Joy Blog. We connected over social media and she asked me so nicely if I wouldn’t mind having a interview with her after she read this post here >

you can check out The interview here: 

The interview was based off my personal experience in poverty.


I share stories of being hopeless and moving into hope by giving first hand knowledge and sharing how I moved forward.

I would love to hear if any of you ever experience something hard that wasn’t easy to talk about ?


Spotlight interview with SheSpeaks

I am adding this to the interview/guest blog post section of my blog. Check out SheSpeaks if you like connecting with other people who enjoy product reviewing.

Please note the viewing stats have changed that have been mentioned in the interview since I had made the switch from blogger to wordpress


It’s not every day you get to have a tea party with Mad Hatter!

Hello everyone,

Did you know?

I love sitting and typing with a hazelnut flavored coffee. I really enjoy sitting and typing in a coffee shop. I’m so excited there is a coffee shop with free wifi right here in Otsego

I do usually stop in and say hi to the ladies mostly I will stay to myself but today I kinda stood out with my daughter, Mad hatter and mad hatters dad was there too.

 I know a few people were checking out the back room in the Mezzo coffee shop with wondering eyes.

So let me explain my wondering friends who we were and what was going on.

My new friend Delania is on a international scavenger hunt.

Delania had to find a child with special needs to have a tea party with.

As you know Bella has a mild form of cerebral palsy and a rare genetic disorder called 22q deletion syndrome. Yes she does have special needs even if she does not appear to have anything going on the outside.   I have a list of specialist we see at the u of m and a few doctors we see locally

We were contacted by a friend that Adam went to school with also has cerebral palsy and suggested he give Adam a call because he knew we were the nice people who would say yes.

Delaina asked so nicely how could I say no?

  I was okay with the idea because we had a long week of doctor visits and it is always nice to have a fun day when we can get the free time.

 I suggested we meet up at this awesome coffee shop  called Mezzo

I felt that meeting down town in a safe location would be perfect and we could have a small tea party while we where there.

I didn’t realize there would be a cutting of the ribbon today for Mezzo Coffee shop.

See I am not always online and in the loop of everything that’s happening here in Otsego You guys have to let me know this stuff happens.

Contact me about local events I would love to blog about it.

I asked the Mezzo coffee shop owner if we could find a place were we could sit quietly and out of the way as my friend was in a Mad Hatter costume. I wanted too make her comfortable because sitting outside was were all the action was for the ribbon  cutting. At first we were going to sit outside because the tables were full inside.

What a fun thing to see that a local business is buzzing with customers.

We were able to sit in the back room and enjoy a tea party with Mad Hatter aka Delania and her father and even Adam stayed for a while but Adam had to take off for work everyone had a nice time getting to know one another and Bella found a new pen pal. Bella is going to draw pictures for Delanias fridge in her dorm room.

Bella enjoyed a yummy muffin with some earl grey tea and made a new friend.

It’s so nice to have people just take the time to spend with Bella and let Bella be Bella.  Bella loves telling stories and rambling on.

I have no clue where she get’s it from? Her father perhaps ?

  I can’t wait for her to go back to school and say I had a tea party with Mad Hatter, because it’s not every day you get to have a tea party with Mad Hatter.

Mad hatter down town Otsego Tea party with Bella.

Mad hatter down town Otsego
Tea party with Bella.

This is also my day 7 photo challenge sign

The sign I used was a sign that was in the back room of the coffee shop we went to.

sign says

smile happy looks good on you.

Let me know what is your favorite kind of tea? Mine is earl grey

A New Bike For Bella after her Ot appointment.

Hello everyone,

Hope this month has been treating you well.

I had a week full of doctor appointments for Bella.

Bella had a Physical therapy assessment (Monday)

Bella also had a Occupational therapy assessment yesterday (Tuesday).

Both at the same place which is Bronson Rehab services.  Both the Pt and Ot therapist were great and interacted with Bella very well. I am truly excited to see the amazing things they will be able to help Bella with. The goals we will reach and mile stones we will achieve together is something I have been looking forward to.

Something out of the blue happen after we were finished with the Ot appointment. Our driver gave Bella a bike.

The conversation I just finished having with Adam about how were we going to get Bella a bike was had before I got into the drivers car. Adam and I were thinking we couldn’t get Bella a bike until Christmas. After all we just finished getting Bella’s back to school supplies, we still need to get back to school clothes, shoes, boots, jacket and a backpack. This is the first year we are in the position where we can take our time and actually pay for the things she needs. Our income has been steady for the first time in ages but we just didn’t have the extra for a new bike. Infact my step son was going to give his old bike to his sister by fixing his old bike and putting inner tubes and training wheels on. The last thing I was expecting was for Bella to get her very own brand new bike and then to get one today of all days.

As I was chatting with the driver about bikes he mentioned his daughters bike was hardly used if any at all and he donated her bike to this bike shop in galsburg. There was a guy he knew who own the bike shop who can fix bikes brand new. Then the driver mentioned that he would call the owner to see if his daughters bike was still there and it was. I was so excited for Bella because the driver (who’s name I am leaving out) decided to go out of his way to help pick Bella new to her bike up. When I saw the bike it still had some of the tags on it. I was told the bike was a giveaway bike his daughter won and it was Perfect for Bella. The bike was monster high pink and had training wheels and streamer. We then went to pick up the backpack that goes with the bike so Bella can ride her new bike and take her poney’s along because we can’t go any where with out her my little poneys.

When we got to the bike shop Bella couldn’t stop smiling, her big dimples light up her entire face and she was beaming.  I hadn’t seen Bella beam like that in a while and I was totally shocked to see the kindness of a person who I had driven us a few times before was just almost as teary eyed as I had been over Bella getting a new bike. It truly is great to give and receive.

It reminded me how last week Bella donated 4 bags of clothes to the Parent to Parent helping hands pantry. I guess this is her good deeds she sowed coming back to her she truly is an amazing kid.  We were truly shocked and are so grateful for our driver not only for driving us back and forth form doctors visits and home but for is friendship to our family as well.

I’m still thinking of how happy this Bike has truly made Bella.

Tomorrow we have one last doctor appointment for the week.  A trip to Ann Arbor. U of M visit.

something else I am up to is on Friday we will meet with a lady and have a tea party with Bella. This lady who we are going to meet was on a scavenger hunt and this lady lives in Michigan she called my husband who was referred to my husband by a friend of ours and suggested she give us a call because she was looking for a family who has a special needs child who would love a tea party. My is Bella going to be in for another shock on Friday. We will meet up at a local coffee shop that I have been loving that’s in town I hear they also have tea there I have only had their coffee which is great.  So Friday is Friday fun day around here and that’s what our fun day will consist of.

On Monday I have a work out with the jazzercize ladies here in Otsego and I am hosting a thrive party which will be at 10 am right after a good work out. Lot’s of snacks to taste I love hosting parties and helping others.

I suppose this bike is also a way of our good karma coming back to us.

Have you ever had a experience like we have ?





Adam was also in shock and he really had a great time watching Bella ride her bike and showing her how to ride it.

Here’s a video of Bella riding her new bike and a photo of  what she looked like with a beaming smile across her face.



Mail Call: Influenster Combos Sweet and Salty


Disclosure: I received  products complimentary for testing purposes.


sometimes I just can’t help myself and I have to share with my friends the goodies I get in the mail.




The combos are all ready a huge hit in this house. I could not even make the bags last long enough for a unboxing.

Sorry there are no video this time.

I have a very happy husband he is a huge fan of combos. I love the vanilla frosting sweet and salty combos and caramel creme so I was excited to see I received two of my favorite packages in the mail.

I have been a member of influenster and I don’t always get every voxbox but when I do they usually know exactly what to pack in the boxes.









#‎combossweetsalty‬ ‪#‎voxbox‬ ‪#‎influenster‬ ‪#‎igotitfree‬ ‪#‎mailcall‬

Photo Challenge Day 2. Incomplete

Photo Challenge Day 2. Incomplete.

Photo Challenge  Day 2. Incomplete.


If your on my Facebook friends list you would have noticed that I took a photo of the blue moon last night. No it was not blue moon but it had some nice clouds around it.  I had a photo that I did take that was incomplete because it was hiding behind the trees so I couldn’t get a full photo.


1. Something beginning with N


Today’s photo of the day challenge is

1.something beginning with N


My new profile photo

My new hair color is red :) yes again!

I think it is fitting for my blog. Let me explain why I thought this one though.

Susi Q I think I spelled that correctly gave a class at  speakup conference I went to called you are your brand. Susi Q says you have to pick one or two things that stand out that’s uniquely you.

I had let all the red out of my hair and I went looking kinda tired looking and didn’t color my hair before I left.

I was thinking about how am I going to brand myself ? while for me it’s my red glasses and my red hair. My husband would say it’s the Maple leaf tattoo on the back of my neck.

I decided to stick to my natural roots (kinda) and keep my red hair. I have strawberry blond hair and I usualy dye my hair alburn or other types of colors.

I thought I have to be confident when it comes to branding my self so I am back to red hair again

here is my before

This is me. I am 32 years old you would never know unless I told you that I had 22q

what do you think is red my color ?


August Photo A Day Challenge


My friend Lisa Whit shared this photography challenge on my Facebook wall. I am going to do this challenge.

One of my hobby’s and skills is photography and I haven’t shared many photo skills on my blog with everyone.

If you are doing the challenge add me to instagram and let’s share photos with each other. I would love to get to know more about the people who read my blog.






Book Review for a friend I made at a speakers conference: Waiting For Heaven

Hello everyone.

I met an amazing author during the speak up conference.


I was so touched by her story and she was so supportive of me while I shared my own story, that a beautiful friendship has formed.

I want to introduce you to an amazing down to earth author and speaker who I know all of you will love.


Disclaimer: I received a copy of this book in exchange for a review but my thoughts are 100% my own. (just putting that out there)


Heather Gillis was also in my small group during the speak up conference and she has a published book of her personal story. I am inspired by other authors because someday I too would love to have my story published.

I couldn’t wait to read  her book and started reading as soon as I got home.

I am honored that I can share my review of her book with all of you.


Book review- ebook

Waiting for Heaven finding beauty in the pain and the struggle Heather GillisBook Review

Book title: Waiting For Heaven
Author’s name: Heather Gills
Finding beauty in pains struggle

Details from website:

Waiting for Heaven
Finding Beauty in the Pain and the Struggleby Heather Gillis

Life can sometimes lead us to unexpected places, to only leave us broken, desperate, and hurting. Heather Gillis and her husband, Mac, waited in anticipation for the birth of their third child. Like many Christian couples, their dreams and expectations in marriage, parenthood, and daily life developed differently than they’d planned, and left them grieving a life that would never be.
Their journey gives insight into a “new normal” and uncovers the stepping stones of the healing process. In their process, they re-discovered God’s abounding love through their experiences of joy, heartbreak, and purpose.

Heather reaches out to parents around the globe to speak openly about being a wife, mother, friend, relative, or stranger during life-changing trials and devastating struggles. In God’s love, she has found beauty in the midst of pain, as well as peace in His presence on earth while waiting for heaven.

West Bow Press ~ April 2014
Paperback, $17.95 ~ Hardback, $33.95 ~ E-book Now, $1.99

Click here
to review and purchase the book or E-book at the West Bow Press website.

Write a Review If you enjoyed Waiting for Heaven, Please take 1 minute to write a Review on  

Picture Heather Gillis

About the AuthorHeather Gillis shares Waiting for Heaven to bring hope and healing to people walking the difficult paths of life. Through her organization, Bowen’s Hope, she wants to end polycystic kidney disease and bring hope to children and families with kidney disease. A wife, mother, and part-time health care professional, Heather shares her heartfelt story of caring for her terminally ill son and finding hope and healing in God. She resides in Phoenix, Arizona, with her husband and two children.

For a description of the books contents check out Heathers Youtube channel a personal word from the author about her book. 


Amanda Ripsam Review


I loved the open honest account of her struggle in coping with the loss of her son. I loved the venerability of how honest her fears and pain is where. I loved how she describes the pain she endured watching her own mother struggle with a different kind of grief while making sure Heather did not follow down the same path her mother had.
I am a sucker for books that tug at your heartstrings and are honest true accounts of another person’s personal stories. I am honored that I was able to meet Heather during a speak up conference we both were in the same small group and shared stories together but I would have loved to hear her read this book out loud. Perhaps on audio in the future ? Heather inner personality is just as beautiful as she is outwardly.
I am honored she asked me to read and review her book and I fully enjoyed reading every minute of her book. I couldn’t put the book down as I finished reading the book in two nights. You will want to buy a copy for yourself and a friend.


Other places you can find Heathers Gills book


Heather is as passionate about helping others as I am and I love connecting with other passionate people.

Please check out

Bowen’s Hope is dedicated to serving Kidney Disease Kids and Their Families.  

Please look around her site and see how you can help be apart of giving Hope to the Kids and their Families!


Thank you so much for reading

Top 10 Tips On How To Survive Multiple Doctor Appointments

Hello everyone,

 How do you do it ? I don’t know I tell them I just do.

Looking at the first full week in Aug is a very busy week full of doctor visits and I still have a few more to squeeze in.

I was asked by a reader to show an example and if I could  explain how I juggle multiple doctor visits for Bella.

Top 10 Tips On How To Survive Multiple Doctor Appointments

Aug 1 Ot at 2:00 pm which is 30 minutes from my house.  I have to use Medicaid transportation to get there and back because I can not drive but Bella needs to have a Ot Occupational   Assessment so we will meet a new Occupational therapist.  The appointment is a hour long. We will end up waiting up to a hour after to get picked up to come home. I will then start dinner and snuggle, story, bath and bed time by 9:00 pm and this is the week we are starting to get Bella on the school routine because if we don’t when school starts it’s not going to be fun at all.


Aug 4 Pt  at 1:45 pm Which is at the same place as the Ot but they didn’t have back to back appointments to make my life easier (of course they don’t) Same as before Medicade transportation to get there and back waiting a up to a hour to get picked up then make dinner, bath, snuggle, story, bed time.


Aug 5 play therapy at 5:00 pm because I wanted to lock in prime time to get Bella a after school appointment slot.  Ot and Pt is not that flexible but I’m on the list I honestly don’t even think the list exist it’s just something that’s said to make us mom’s who didn’t get prime slot feel better.


Aug 6 U of M Trip Sleep clinic Yep back to normal for us. Thankful that this appointment is at 2:30 pm I don’t have to leave my place until 11:30 am this time it’s a 2 and a half hour trip for a 1 hour appointment with doctors who actually know what 22q is and the effects of lack of sleep can do to someone who has it. Bella walks and talks in her sleep and has limb movement disorder basically my kid is always on the go even while she’s sleeping.  Iron was given to help with this but Iron is a piece of junk when it comes to helping Bella.  Bella also has a mild form of cerebral palsy and sleeps with leg braces on at night and has tremors that are seizure like but are not seizures for that she takes a mild muscle relaxer and it has been a great thing for Bella she isn’t crying in pain as often at night. Behind her legs get’s these knots and I often have to stay up working out her knots behind her legs.

I have to still get speech and a new script because it expired because I have had way so much going on that I just had not gotten her in yet.

still have to set up Dental appointment to get two more crowns done  and convince the last place we had Bella’s neuro evaluation done to get a updated evaluation and have them do it s charity care because we have Medicade as it’s something that Medicade does not feel the need to cover of course not why would they?

I get to spend my day tomorrow calling the last few places as well as getting a neurology appointment set up, gastrologist appointment set up because she also has constipation issues and we are seeing some of the same issues that I have she has been showing (I have gasteropaies I am hoping that’s not what it is and we got it early) We get a bit of a break and we are back up at the U of M once again for a Ear Nose and Throat visit.

How do I manage all of this ?

Mandy’s top 10 list on how I manage doctors appointments with out going crazy.

1. Make a list with the name’s of doctors with address and phone numbers the time you need to be there the time medicade can pick up and drop off.

2. When calling the back of the Medicaid card you ask for transportation to appointments there’s a option or a direct line to call them.

3. Pack a busy bag for the child fill the back pack with coloring books, my little poneys, snacks and water bottle.

4. Pack a busy bag for myself while I wait too. Usually this is my phone so I pack light and I always have a cup of coffee.

5. Be calm, centered and patient with myself and my child because being frazzled will only have my kid feed off of me.

6. Your crock pot and left overs are your best friends for dinners when there are doctors appointments.

7. When Hubby comes home from work say *TAG YOUR IT* and run, run for the hills… or the kid will pull you back in.

(really working on this one can you tell)

8. Get clothes, bags, snacks ready the night before so your not rushing out the door and forget anything. (Forgetting things leads to Bella size meltdowns)

9. Get some sleep the night before don’t be up the night before until 2 or 3 am because your too concern about outcomes of visits to doctors it wont do any good anyways.

10.  Spend time with hubby after Kid is in bed you need couple time every night to re charge.


This photo above does not reflect our current appointment list but it’s a example of some of the appointments we attend.


We have officially out grew our medical binder so we are moving on to a larger FIVE STAR binder with a zipper and file folders.



There are my tips what are some tips you use for managing multiple doctors appointments. ?

VCFS Awareness Day is on Friday August 28

 VCFS Awareness Day is on Friday August 28

My friend Michelle Padilla posted this on her wall and we both want to spread as much awareness about VCFS 22q11.2 deletion syndrome (DiGeorge) as we can this week.

I want my readers to make it for a whole week wearing pink or blue to help those who have been affected by VCFS, DiGeorge, 22q11.2 deletion syndrome.

It’s the disorder that Bella and I have. It’s also something my father and three of my 4 siblings have.  I also have met so many other people online who have it or have children with it.

I will be wearing Pink and blue will you?

My blog colors and profile photo will also be pink and blue.

Like, comment and share this blog post with all of your buddies to make them aware of what 22q11.2 deletion is.

If you want to know what Vcfs 22q Digeorge syndrome is please read my blog post here >

#22q-/Vcfs #no cure but we can treat symptoms #rare #disease #hope #support #knowledge. Please repost.. And help those who have been affected by it..

Speaking in a small group at speakup conference and my experience.

Speaking in a small group at speakup conference and my experience.

I had so many people ask how did it go?

Here is one of the speeches I wrote and some of my personal feelings about my experiences.


Thank you all for understanding when I asked you to read my experience of how it went on my blog.

I had homework before the conference started and I had to write a devotional.

Psalms 139 :13-16
13) For you created my inmost being;
you knit me together in my mother’s womb.
(14) I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
(15) My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
(16) your eyes saw my unformed body.
All the days ordained for me were written in your book
before one of them came to be.


Bella had a 4d ultra sound when she was forming inside of me before I gave birth. The reason for the 4d ultra sound was because of the genetic disorder 22q11.2 that we have.

Adam and I went to this ultra sound appointment because I refuse amino testing. However  wanted to make sure she was developing along like normal do to the extra embrotic fluid and I was having some issues feeling her move around she basically wasn’t very active, Don’t worry she’s more then made up for it after birth and just today she fully expressed her ablity to be as active as she can be at 8 years old.

Back to the story I shared.

Bella was inside of my stomach I was having extra fluid. Bella blood pump though her lower left ventricle with a extra hole that caused the extra blood to pump stronger.

When Bella was born that extra blood issue resolved on its own!

After Bella was born her heart doctor discharged her in shock and said he sees mysterious things happen often.  I had two different second opinions and both of the other doctors discharge her as well.

How grateful we are to know there is a creator even one who creates humans with missing genetic material or additional genetic material. He knew purpose when he created Bella and I with a missing piece of Chromosome and he has a plan for us.

Psalms 139 :13-16  is a bible passage that touches me so close to home. The passage has always been one of my very favorites every since Bella was born.

The very core theory of creation is written in this passage and I wonder how many people feel this way about the God that I know too. Not the big dude in the sky looming over being judgy and all. The spirit, holy spirit what ever you want to call that energy that creates simple cells inside of our bodies that change all the time with out understanding.

This passage is what helped me to have compassion for the reason I was born with a missing genetic chromozone. Searching for self I found spirit energy that creates cells inside of us because God knows each one of us by every fiber and strand, he created us fearfully and made us wonderful.

The function of the digestive tract and the related organs even if they are like mine and develop gasteropaies and causes us pain there is energy that is inside causing it to go bonkers and making things out of wack. Then think about the longevity of the heart some of us can live longer and others not so much but that’s because of spirit energy. We don’t have to like this but if we admit it or not the formation and function of nerves and of blood vessels, the cleansing of the blood through the kidneys, the complexity of the inner and middle ear, the sense of taste and smell, and so many other things we barely understand—each one beyond hauman’s ability to duplicate. Go a head and try for a moment to think how does that simple cell form when the sperm touches that egg. What connects the inner tissues to divide?
Truly, we are fearfully and wonderfully made.

Simple cells form and develop and inside those cells is a energy that forms those cells inside of those cells.  We learn in science class basics but what causes the very small particles to form even looking at light from the sun and moon there’s mystery.

Doctors, scientist and the people who are experts don’t understand exactly what that very small matter is.

I do… I think.

That matter is spirit.

There is no rhyme or reason why I have this disorder and I am not having all of the exact same symptoms that Bella my own child has. There is no explanation it just is and when God created the earth he was done and said as it is when he was done on the sabbath day. Am I just going to accept that with out questioning it ? I do.

The passage reads we are fearfully made!

Fearfully made is meaning we are in awe, inspired, divine.  There is no reason to be scared of our creator but we are in awe of our creator we don’t even fully understand or grasp that energy inside that simple cell that forms us that causes us to have missing chromozone or additional chromozones, we understand the simpleness of x and y but do we understand what forms the insides of the x an y inside of those small simple cells that start it all inside our mothers womb while we are form.

Imagine me standing up in front of the small group of women I was with, we were sitting in a half circle around each other offering support as each of us spoken our speeches.

As I started my speech I was scared to death I could hardly get the first part of my speech out and I was shaking and wanted to run away.

I stopped… One breath, Two breath and paused and explained. I had to put down my notes clearly the only way I was going to get out of my head that night any of my thoughts was  not where I was headed because I needed to really get this message there to someone in this group why or who I will not ever understand that feeling inside of me I just took a big breath and started speaking with everyone in my small group.

I believe this is spirit the holy spirit that’s a part of life it’s self a different passage scripture for another day with out sounding too preachy.

The spirit pushed me to put those notes down I sure didn’t want to but I did.

I am not to be scared, I am fearfully and wonderfully made in God’s image even if his image isn’t to my liking or anyone else.

That was my second night, my first night was when I introduced myself people in the small group listen and were shocked as I read my story that I share here on my blog I just shorten it up and it went past the 3 minutes max it went 6 I was so scared reading and I shook too that night and my voice wouldn’t come out any more then a whisper.

That was the easy part.

The hardest part for me was small talk sitting at the tables in the conference. I didn’t feel like I fit in I felt out of place.

People at the conference reacted like I needed to be carded when I told them I was 32. over and over from one person to the next I got reactions of shock.


I shocked them when I said parts of my story and I hadn’t even gotten to the good stuff it was just small simple talk. Small simple talk that scares the living day lights out of me. Why do I have this image issue I will never know. Maybe it was from when one of the jerky kids at school back in 7 grade told me I belonged to the lower level elementary side with the 4th graders, maybe it’s from everyone who has the need to stop me and say my you look so young when I am kissing my husband in public or doing mommy things in a women’s bathroom with my daughter or taking her to this place or that place alone.

Small simple talk with people even nice people is something that I hate doing you know how it goes Hi what’s your name? where are you from? That stuff was on my name tag everyone still asked why ??

what do you do for a living? I am a stay at home mom. I am a 32 year old married mom and step mom I stay at home and I am CAN’T EVEN GET PAST MY AGE ! (yelling because that’s frustration) Why would spirit nudge me to go to this event if people can’t get past my appearance and see who I am with out first thinking oh she looks so young almost too young to have a story to share I bet it’s going to be cute with stories about people she knows. WRONG!!! I write my story I write my truth.


Their responses crack me up each time sometimes I try very hard to keep those inside laughs to myself but a few people I was actually able to fully trust and talk about how it made me feel.

I was so tired by the last day that feeling like they were looking at me like I didn’t have experience because of their judgements based off my appearance was emotionally getting the best of me.

I tell my story and it’s hard it’s sad and they see I’m not hard, I’m not sad sure I have moments but I was shaking during most of my time at the conference like this little girl was trying to climb out of my throat ready to shut down everything I was trying to speak.

Anxiety sucks my loving God that created me made some crappy things but I can’t deny that energy that builds all of those cells. I can’t deny my worth because then I would be denying who I am made in Christ and I refused to shrink because I made others uncomfortable. I wasn’t as young as they thought I was, and I left feeling I may not matter to many people who didn’t get a chance to know me because my young looking face wasn’t approachable for them to relate with! but those were not the people I needed to share my truth with.

I walked away from the conference feeling whole because I was going back to my normal.  I was okay to just simply look younger and it is okay here.  It’s how I was formed with all of those simple cells inside of me.

My high light was sharing my speech, meeting new friends but mostly my highlight was…

I did it! I pushed pasted my fear I listen to the inner internal gut gps that nudge that spirit that puts me in the places that is not my zone. My zone is not speaking it’s writing and rambling on but look at me! I DID It and it’s over and I made it out in one piece infact I made it out with more confidence than I have ever had and I’m finally starting to feel comfortable in my own skin. I feel comfortable expressing things that are hard. I understand that if people don’t like what I share it’s okay we are not created for everyone to like us. My looking young just simply rubbed some people the wrong way. That’s okay too.

I am fearfully and wonderfully made and I have worth because I’m created by spirit.

I am so thankful for this experience I made friends outside of internet land  the people who got past my looks and took the time to know me.

I had a great time feeling emotions if you had asked me to go a few years ago I would have felt numb then maybe the age thing wouldn’t have been such a issue for me internally.  I wasn’t ready for this kind of thing. I was not okay then like I am now. I didn’t have the lessons I learned going though the hard stuff now that the hard stuff is over and life is stable I am ready to be myself.  I am ready to share my story and I did. I learn I can write and I can speak and I do a lot better with out notes.

People change and grow just like those simple cells and spirit is what makes us.

We are fearfully and wonderfully made.



Welcome to the snuggle bear den community

Welcome to the snuggle bear den community

Disclosure: I received a snuggle bear to write this review.  I am also a member of the snuggle bear Den and I earn points and badges that help me qualify for special offers like the snuggle bear Welcome mission.  Amanda Ripsam

Snuggle bear

Snuggle bear

I take servery to earn points so I am eligible for future missions and sometimes I get Free products and coupons.

If you are a member of smiley 360 then you will be comfortable with using the site it works pretty much the same way. Take qualifying surveys to see if you are accepted into missions or not.



Need a invite go a head and click this link here ->

Join the Snuggle Bear Den and complete mission to earn points and badges that you help qualify you for special offers from the makers of Snuggle!! After you sign up, be sure to join the Welcome mission to earn points and be eligible for future missions that may contain FREE products, coupons and more!

The Bear Den

The Bear Den is a special community built for people who love all things Snuggle. As a member of Team Snuggle in the Bear Den, you have the opportunity to connect directly with the Snuggle brand. You’ll receive special offers and announcements, share new ideas and get insider access to new content or product information.

Points are the virtual currency of Team Snuggle. You can earn points for almost everything you do in the Bear Den, and earn badges for completing various activities. Points and badges increase your chances of receiving future missions and helps qualify you for special offers from the makers of Snuggle!

Okay I really couldn’t help myself one last post before I took off to the conference. Blogging is addicting what can I say?  I have no excuses for myself or any shame.

I had this cute snuggle bear show up in the mail and I am going to take him along with me to the conference. As part of the mission we are to share on social media where he travels when he get to our homes. So far he’s been crashing hard on Bella’s bed because he had a long journey.

Are you part of the snuggle den yet?

->  just copy paste and sign up and your in it’s that easy. I have a snuggle bear badge on my blog just because he’s so cute.

Have a good night everyone.


I am on a blogging break to attend a speaking conference.

Hello everyone,

I have some exciting news I have mentioned it a few times on social media but I wanted to share with my friends something that I’m really looking forward to this week.

Thursday, Friday  and Saturday I will be at the speak-up speaker conference in

Grand Rapids, Michigan. 

I am so honored I received a scholarship and that’s what I will be doing this week instead of blogging.  I will learn so much and I am looking forward to growing not only as a writer but a speaker as well. I feel speaking and sharing my story is just a natural step that I should be taking. I get to share my story to more people spread awareness and express the challenges I have faced that would I never wish on anyone.  The fact that I can see the emotional reactions of people while speaking might make my stomach twist and turn and I may pass out but I’m going. Even if speaking is out of my comfort zone when you feel compelled to do something you don’t think your good at but have a desire to do that I realize is because that energy it’s usually spirit tugging away at your arm sleeve.

Monday I have jazzercise and I will miss out Wednesday and Friday jazzercize class this week because of the conference.  I have been having a ton of fun working out with a great group of supportive ladies. (another comfort zone I’m out of) Take that Old Mandy!!!  I like working out and I feel great after a good pool of sweat dripps down my head. yes, I did just type that.

Blogging has been a amazing journey and healing tool for myself but hiding behind a blog is comfortable standing up and speaking while that’s just something I’m not sure I’m cut out for. I had a friend who posted this conference on my Facebook wall long story short my friend said I need to go and see if I can get a scholarship. I didn’t have any extra money to attend anything like this. So I said why not I applied and a week later I get a email saying I was accepted. My jaw hit the floor and my husband was really puzzled but so excited and we had a chat and everything was set for me to go learn how to speak in public.

With this conference I plan on stopping old Mandy dead in her tracks. I have no excuses everything is all set for me to go. I have the support of my husband who made plans for Bella to be at my sister inlaws place for the time I am away.

I have friends who have agreed to allow me to crash at their place and take me back and forth because I can not drive. I was planning on doing the bus but the heat and my health just wouldn’t do well on a 2 hour bus route. My friends allowing my to stay and take me back and forth made way for no more excuses.

This way I can go and relax and have fun.

I had homework I have been given in a email and it’s been a awesome challenge to complete.  I had to introduce myself in under three minutes. I also have to share a experience in my life that could help others and use a scripture application to go with it. I had so many topics I could write about but I am not going to tell you what I wrote about in my speech until after the conference. The final part of my home work is a devotional which I will finish up tomorrow

I have my niece here spending some time until I go. (hopefully that’s the game plan) she has a hard time being away. Just like I might have a hard time being away from my family while I’m gone for three days.

I probably will not have time to chat with my friends online not that I have had a lot of time this past year but I have been living life and taking care of old Mandy and this new Mandy is having a blast at kicking life’s butt. I have let go of things that no longer served productive purpose.

I have done so much that has been out of my comfort zone lately! So deciding to go and share my story from outside side the comfort of my blog. Insert > (Huge gulps air) is the next logical thing for me to do right ?

I can read and stand up and speak but I feel like I might pass out or get sick to my stomach with out my speech in front of me. I am also excited I get to share my story and meet new friends (or scare people away with my story). I’m going all in anyway.

I have my husbands Hp slate 7 tablet reset and all ready for me to go.  I have my cannon camera battery charging and my Lg cellphone is tagging along. Wednesday I will go and shop for a few outfits for extra confidence.

I will miss my family and friends but I will be back and I will have a lot to blog about when I get back or even while I am there who knows.

until next time my friends have a great week and I look forward to hearing from all of you when I get back.

Have you ever attended a speaking conference?  Do you have any words of advice or tips I should take along with me?

Leave a comment and let me know.




22q11.2 deletion syndrome and me



Hello everyone,


I have had a question from a reader for me

The question was: How does my disorder effect me?

I’m 32 years old and I look like I’m in my early 20’s. Yes, I started with the most thing I get commented on.

I have always looked younger then my age and my daughter is starting to pick up on this feeling too she confided in me the other day about this and my heart just broke hearing it.

I totally wanted to protect her from the hard stuff of this disorder. Maybe that’s why I’m such a mommy bear when it comes to this medical stuff.

The other way it effects us both is we have hypocalciuma which basically means we both can get to a low calcium number. If that happens we pass out or start turning blue and having seizures. I haven’t had any since I was pregnant with Bella. My pregnancy with Bella as you can imigine was very high risk and yes I did know I had the disorder before I had Bella.
I have had some passing out spells. My ear drum collapsed when I was 12 years old and I had to have tubes in my ears every year until I could have the adult tubes in which was put in when I was 19 years old. I’m 32 and other then mild clicking sounds I don’t have any ear issues that need surgery.

Iron levels drop and I feel weak some times.
I also have a history of hypocalciuma ( low calcium levels that if dropped very low can cause seizures) that could be do to the DiGeorge syndrome aspect of it. Then there are some issues with Adhd .


Bella wears leg braces at night because with out her leg braces she’s up all night screaming and crying in pain. The knots behind her legs cause her legs to feel so sore. The spastic cebreal palsy plays it’s roll the backfen has been a wonderful god send to our family it is a very low does and it allows us to sleep at night. Stretching the area behind her legs and rubbing the kots out by feeling the small tight tendons that knot up I don’t know what else to call them to describe them and I can’t take a photo of them because it’s something you have to feel and work out with deep tissue massage. I have gotten pretty good at the working the knots out. That’s something I don’t experience. I experience pain in my stomach every time I eat that’s the gasteroparies that causes me to to have so many issues with foods and digesting the foods so I just stick to soups, smoothies and soft foods. Low fat low fiber high protein. As you can tell it clearly effects us differently. 

Do to this stuff above I don’t sleep often I can go a few days with only 4 hours sleep at a time. There are other days where my body wants to make up for lost time and it takes everything in my being to complete simple task some times because of the pain levels I am in. I grin and bare it for the most time other wise people treat me like I’m the weird one or the weak one that needs saving. I am fiercely independent and learning to lean on my husband has been a challenge.

I have anxiety attacks some times but I think if we are all honest with each other that everyone has some form of anxiety it’s a human emotional reaction to dealing with too much for too long and our bodies start to wig out do to it. No differently then when we loose a love one and experience grief. 

I have been in therapy for years and it has help me with coping skills and the medication I am on is very few. I do use most natural products that I can.  I do take a depression medication that helps with adhd as well. People look at you differently when you share your illness so unless we really know one another I wont get into details about it unless here on my blog because this is my place to let it all out.  I also take medications for reflux and gerd. So if you want to judge me for it go a head don’t let the door hit you on the way out. That’s how I see things life is too short to be concerned with how others thing of me.

I hope that helps so many people have asked me how it effects me and I just have a hard time describing this issue because symptoms flair up I treat the symptoms and try to move on the best I can before the next flair up happens. Flair ups include gasteroapies flair ups and exhaustion flair ups from my symptoms but with life being balanced I manage it rather well.  Infact so well people don’t really know all that I am dealing with unless they really know me.

I am so thankful for everyone who has asked this question. It’s often asked in online support groups which I don’t take part in much I don’t have time to deal with everyone questions and this blog is a great way to offer people the type of guidance and advice I used to offer people newly diagnosed or with children newly diagnosed with 22q. 


Look who connected with me: Shelley Dieterichs Good Buddy Notes-asked me to write a review

Hello everyone, It has been a while since I did some product reviews.

As some of you know you can find me on LinkedIn. If you don’t have me on your LinkedIn list feel free to add me.

I received a email from a lady named Shelley who asked if I could do a product review for her in exchange for a free product.

How can I say no? Shelley asked me so nicely.

Shelly also has a wonderful personality she was very nice to talk with over emails.

Let me introduce you to

Shelley Dieterichs

Shelly also blogs on her website I love, Love, Love it when a company blogs and we get to know more about the person behind the business.

See her blog link here.      

Shelly contacted me and asked if I could write a review for her products. Shelly’s line of personalized stationery and gifts for children is adorable.

Check out her adorable letter stationary, personalized kids and pet products here  

I received a dress and excellent communication along the way from Shelly in exchange for a product review.  She liked some of the other product reviews I had written. Who knew other people actually read my blog ?

okay, I knew it google analitcs told me so.  About 200 people a day now.


I decided to allow Bella to provide this review of the dress since she is the one who is wearing it.


Please keep in mind that this dress it was made for kids who wear a size 4t and under.

I asked if Shelly could make the dress a size 8 because Bella loves her name on everything. I could have ordered other items but I really wanted to see how this shirt would look in a larger size. I had a feeling it would make a cute night gown.

I did think Bella would think it was too cutesy to show off to her friends because it has her name. A name on a shirt in 2 grade just isn’t cool infact it’s a social no no in kid land. Names on tee shirts goes only on like kids in kindergarten. Little kids wear shirts and things with their name on it as bright as day and oh so cute.  A white Tee Shirt dress is indeed perfect for toddlers and pre schoolers but not for a kid going into second grade.  At least that’s what my husband informed me and after thinking about it he wasn’t wrong.

However Bella proved us both wrong Bella loves her dress as a night gown.  Honestly, I can’t get Bella to wear anything else to bed now.  Bella says the cotton Tee Shirt is so comfortable.  Bella loves her name and the letters. It was made just for her from this lady I met online name Shelly and Bella was just excited and happy that someone she never met thought about Bella and made something just for her.  Totally touched my heart too. If I could give Shelly a big hug right now I would.

Bella is a very creative child and wants to make her own designs around the shirt.

So what did Bella end up getting ?

A simple white Tee Shirt with her name in these adorable alphabet letter shapes and cute pattern square where pockets should go.

Bella she said the pockets are just a pattern but she could work with it.

The kid cracks me up some days.

I also had in my package a card from Shelly as a thank you note.

The card was very cute too.

I will have to go back and order business cards at some point or order stationary for when I write to my friends and family in Canada.

Over all a wonderful lady who sells some super cute personalize kid and pet products there is also a very beautiful photo frame that is custom with a name and date on it I am keeping my eyes on. Perhaps for a Christmas gift to myself some where down the line.

Over all a 5 out of 5

I had a great experience. I even want to do more kids fashion reviews because of this review.

Let me know if you have a kid friendly product or service I’d love to do another fashion review.


What do you think of the Dress Bella received?

Good Buddy Notes  Tee-Shirt-Dress Kidsdress Review

Good Buddy Notes
Tee-Shirt-Dress- Kids Fashion
Kids dress Review










Be of service- Are you looking for a place to volunteer

  • Hello everyone,

    I have a great resource/website for you today. I am sharing Parent to Parent of Sw Mi

    The link here is a list of the services they offer.

    Here is a link of the resources that parent to parent shares

    Why am I sharing this instead of a rare genetic organization or a 22q11.2 deletion  organization?


    Adam and I are one of a few people who on the board for Parent to Parent, check out the other people here.   notice the name’s Ripsam and that my website is listed under where my name is


    I think my favorite memories so far of Parent to Parent is Adam both attended a parent mentor training class and we can mentor other parents a few months back we receive our certificates after class.

    The way we got connected to Parent to Parent is after my husband had a interview they hired someone else instead who had more experience.

    Adam was offered a spot to sit on the board of directors for Parent to Parent. It wasn’t too long before I started to get volunteered my volunteer services by my husband. I met the director though a plant sale one year as conversations started connections were made.


       Helping other parents who are going though what we have gone though is a passion of both mine and hubby’s. My husband and I are both passionate people so it just felt natural for us to join something as amazing as a organization for Parent to Parent.

    Personal support workers  and mentors are the one’s who have helped with the IEP meetings at Bella’s school. If you are looking for a supportive group of people Parent to Parent is it. I just can’t say enough of all the good that

    Parent to Parent does.


    A mom and I were talking one day and I wanted to start a group for parents who have children with the same chromosomal deletion my daughter and I have. Another mom who works for parent to parent suggested we start form a group but one for parents of children with rare genetics and so a local support group was formed. I love brain storming sessions.

     The support group meets once a month for the summer months it’s closed for now but starts again in September.

    There are so many group events and activities that Parent to Parent is hosting.

    I believe it does the soul good to volunteer time to a great cause because what we put out into the universe is what we get back in kind.  

    I could ramble on and on about all of the amazing people who are apart of Parent to Parent but here’s the website again so you can check it out for yourself.


    You will want to save this website if you are a parent to children with special needs or if you know a parent who has special needs children.


    Below is a photo Bella took of us volunteering at the children’s carnival in Allegan Mi. That day we made paper puppets and shared about all of the amazing services Parent to Parent does.


    I hope you found today’s post helpful.


    Check back tomorrow for Day 6 of the feel good blogging challenge.


A common misconception that really annoys me

The most misconception that is out there is adults with this disorder will have mental health issues and will have trouble living fully functional lives. The question I get asked often from parents, are looking to know directly from an adult with this disorder is how well will my child function as a adult?

This question alone does not annoy me.  The thing that bugs me the most is the research that is put out on the internet about adults. Of course parents are going to be alarm if you tell them that their child will hear voices in their heads when they are older. I can assure you hearing voices is not a issue with any of the adults I have personal known and met online. I am not saying that there are not adults who do hear voices but the fact that I have met well over 50 other adults with about 4 or 5 of them being in their 60s the  data is alarming and mostly inaccurate. The research done is  basked on adults who do hear voices and when the research team discovered some of the adults who hear voices do infact have 22q11.2 deletion the misconception started to take a strong hold and putting fear in parents every where. I am sure there are the more sever cases of this disorder who do hear voices but to jump to the conclusion is frighting to anyone.  I know more adults who live fully functional lives with this disorder then I do who cant live fully functional lives. Some of the adults I know do need assistance but the adults who have this disorder are often dealing with multiple medical issues like myself but with self care and self education and self advocacy we manage well. A lot of us are even raising family’s of our own. I know this with out a shadow of a doubt that must of us adults with DiGeorge 22q11.2 deletion syndrome all have different symptoms from one another. Sure some of us can relate to having a few of the same issues and it’s nice to be able to talk to others who have lived a life with this disorder who can tell the parents of children with 22q11.2 deletion that being a pro active parent and making sure you take a breath and take time for self care and not to overly stress about the future but to think positive and focus on the health issues in the here and now.


What’s a source of confusion within your business that you can address in today’s post?
What is an question you get asked *a lot*? What’s a source of confusion within your business that you can address in today’s post?I often get asked if my blog is an awareness blog but it is not. My blog is to share my story and help others be their own advocates by shaving information resources and encouraging others to seek their truth and share their own stories.  My blog is to help inspire other people who have children with this disorder to take one day at a time and to enjoy their children even with all of the health issues. I hope to bring compassion to something so unknown and scary for others.   children, teens and adults are a blessing and are so worth it. 

The history of DiGeorge syndrome

my goal was to get information on a question I had from a reader last week.

  • Who was the first person who was diagnosed and treated and I am so excited to share with you my knowledge and that I am personal friends with Dr Anthony Digeorge.

    A personal post from his Facebook wall that I am so excited to share with all of you.


    Anthony DiGeorge

    Yesterday at 12:02pm ·


    The History of DiGeorge Syndrome!  Also known by many other confusing names such as 22q for short because of the location 22q11.2 deletion syndrome and Velocardio facial syndrome.



    Anthony DiGeorge

    “DiGeorge Syndrome History – The first patient with DiGeorge syndrome was initially cared for at The Children’s Hospital of Philadelphia. However, as the infant‘s condition deteriorated without a diagnosis, the parents requested a second opinion. So, the baby’s pediatrician at CHOP referred the baby in January of 1965 to Saint Christopher’s Hospital for Children. That baby found its way to my dad’s Clinical Research Center where my dad and his colleagues made the first diagnosis of DiGeorge Syndrome. God bless that first baby and the baby’s parents!  God Bless that baby and those parents of his for being amazing advocates and helping share the knowledge with an amazing man who is known world wide.”

    I’m so grateful as a person diagnosed with this disorder and a mother of a child with this disorder. I found out I had this disorder when I was 21 years old I am 32 years old now and I have done a lot of research and self discovery along with making a lot of connections in the world of genetics and rare disorders but nothing makes me so excited to share with you the fact that I can share some first hand info passed on from the Doctor him self. Lives were changed forever by the first family who was diagnosed first it’s such a shame that the same name campaign didn’t acknowledge the true honor of the 22q11.2 deletion syndrome and vcfs.

    Anthony DiGeorge is inspiring and his passion to follow in his fathers foot steps must have been a difficult journey to fill.

    To Anthony DiGeorge for spreading awareness and his kindness every where he goes.


  • 2

    How are certain changes in your industry affecting your customers?  The same name change campaign may have set back years of history it’s a on going debate but honestly 22q is just a short term to make it easier for people to explain in layman’s terms of what DiGeorge syndrome is.

    Doctors do infact learn what Digeorge syndrome is in their own genetics class however a group of parents took it upon themselves to shorten 22q11.2 deletion  try to eliminate the frustrations of trying to explain what it is their children have. However Adults and children alike do need to be tested more often to get medical treatments because there is no cure there are factors of the DiGorge syndrome that is typically common in patients.

    How are certain changes in your industry affecting your customers? Is there anything they should know about? Anything that they would find fascinating?

    If you haven’t all ready I highly suggest you look up what DiGeorge syndrome is.

    To awareness of DiGeorge Syndrome
    This is the material we use on Children’s Hospital – HCFMUSP – Brazil

    Digeorge syndrome This is the Doctor himself.


    I hope this clears things up and if you have any questions comments leave them below and let me know what you think about the history of DiGeorge syndrome.



22q and ear issues


Often you’ll find us in ENT offices many infections over the course of the year but one thing I am grateful for is every year it has gotten better with Bella’s ears. She’s had only one set of tubes in her ears and her last tubes had closed up that tiny hole so it looks like no more tubes for Bella. The tubes when we had them put in back when she was 2 years old was a blessing she didn’t speak much and after the tubes were put in boy did she take off talking almost like she picked up a new set of ears over night. My theory is she was able to hear with out all of the fluid build up and that gunk that was wedge back behind her ears and was more comfortable. The hold healed up a lot sooner then even my hole healed up and I am happy to say that we are not looking at tubes in her ears any time soon. For a while I was sure almost 100% sure she would need a set every year. That’s what I had endured and that’s what helped my ears. It just goes to show you the difference between changing ear doctors from a regular Ent to a specialist that sees 22q ears all the time. .

We see a specialist at the U of M and this year she ended up with a infection that lead to a fever which lead to seizure in class and that scared me to pieces and shook me at my core. It was a mild seizure one where she simply looked like she was fallen a sleep to the normal average person but to someone who understands this disorder and knows it inside and out I was scared and you know it takes a lot to scare me with this stuff. 

The doctor though he was assume and help comfort my fears while he assured me that she has been improving over the years and that putting tubes back in her ears was not going to benefit her I knew then he was right but kept remembering  when i was growing up with out knowing I had 22q I had tubes in my ears every year because my ear drum collapsed and in order to hold the ear drum back up I had to go every summer and get new sets in my ears every year until I was 19 and had a adult set of tubes. After the adult set of tubes were put in place finally that hole I had closed up and all is fine. Now I am 32 and only have ear issues when my ear clicks. I figure I will deal with a few nights of ear clicks during allergy season vs surgery every summer. I don’t wish this on my own child though and I am so glad we found the team we see.

What have your experiences been with 22q vcfs and ears ?

Teeth and Eating/feeding issues with babies kids and adults who have 22q

Hi there,

I’m going to respond to a group question that is a hot topic in the 22q community.

Eating/feeding issues with babies kids and adults who have 22q.

Perhaps my personal experiences of my own and sharing about Bella’s issues might help someone who might be going though the same issues we have.

Often I go to the U of M to the crainofacial team and I am reminded of how far we have come on our journey.

Bella had some feeding issues when she was born.  Okay a lot of feeding   issues.

infact I couldn’t even breast feed her because of her weaken palate mussels that I didn’t find out she had until years later. Bella was not able to latch on and when she did she would spit up though her nose and end up chocking and gagging. We were lucky to live so close to Helen Devos hospital because we had a few scary ER trips where Bella turned blue.

A swallow study’s later and we discovered that in order for Bella to eat we had to thicken her formula with rice to the consistency of honey.

I was reminded of this at our last U of M visit a mother was sitting in the waiting area trying to desperately feed her child laying him in her arms.  I only wanted to say try sitting him up right in a car seat and use a suction nose bulb thing aspiration suction thing. I had the feeding thing down to a science. I wanted to offer help because that’s just how I am.

What stopped me was my thoughts of when Bella was that young. I smiled at the mom and said I been there too. I understand the struggle we chatted and I felt the urg to blog about feeding issues after a few moms were talking about it in a group I am in.

I only wish I had known about the struggles of feeding children before Bella was born. I had read about it but nothing in a book could ever prepare me for actual experience everyone’s experience with feeding issues with this disorder is different.   To avoid the heart break of not being able to do what I was told was the best thing. The judgements and stares as I fed her thicken formula when I was out with Bella and all of our equipment that I toted around. I had people often ask is all of that really necessary.

When Bella became a toddler she had failure to thrive and was put on a junk food diet I was against the idea but listen to the doctor and did what ever we had to do to chunk her up if even for a bit.

Constipation was a huge issue and I know more about poop then the average person does. It’s not something I am proud about knowing but if you are a parent to a child with or with out this rare genetic disorder you will understand.

I have my own stomach issues with gasteroparies and I think I know a thing or two on how to get un stuck or un plugged up. Word of advice I would not use Maralax  if I had known how much she would have to depend on it vs the alternative health treatments that are out there I would have opted for the healthier alternative options. We feed her like any other kid now that she is 7.

*avoid greasy foods Greasy pizza and burgers only made Bella throw up and I can remember how awful it felt myself to enjoy a great burger and end up hugging the toilet bowl after words.  If you do pizza and burgers just make sure the grease is blotted and drained and any of the meat toppings are lean proteins easier to digest

*acidic foods are not your friends Lemonaids and such are not friendly in large amounts. Limit those drinks. Small sips at a time.

*sugary drinks really do cause cavities. When Bella was smaller she was put on Kepra for her seizures turned out Kepra made her seizures worst. In order for Bella to take her meds we would flavor her med with a flavoring and put it in a sports drink. Just don’t do it folks. cavities formed in the spaces in between Bella’s teeth behind in the back where it was hard to floss.  You’ll spend extra time in the dentist office and the first part of healthy digestion begins with the teeth. Have those check ups regularly.  They make some great stuff for kids now to help prevent cavities if they do need to take meds with flavor just ask your doctor about what they would suggest.

My own teeth started to break and fracture after I had Bella I was 24 when I first noticed the changes. As a busy mom and wife I didn’t have much time or money to tend to my needs until one day I started to have flair ups that sent me to the ER.

I was refereed to a surgeon and we started to work on reducing the acid in my stomach I devolved a mallory wiess tear., kidney stones and gallstones as well as a massive hitial hernia and that was my biggest issue. Getting the GERD under control has helped some what with the pains and I have changed my diet I eat mostly bland mushy foods and do a liquid diet when I over do it. Weight loss struggles is my biggest concern at the moment it’s a must for me to loose weight do to my health issues related to having gasteropaies another rare disorder. Like having one rare thing wasn’t enough. That’s how this blog started when I first was put on Bed rest for a while. I was in so much pain before I couldn’t even walk to the end of my drive way with out huffing and puffing. smoothies and soups are my way of life now mostly. I will have days where I will eat things I shouldn’t but then I have to use the liquid diet to get it all moving and out of my system. One test after another I had wires shoved down my nose to determine the level of acid refulx I have it was really high, I had to have a uppper and lower gi those really are not that bad it was the bravo capsule  that I had to have done that scared the you know what out of me. It was what help get some more readings to determined if I needed a swallow study. So Bella’s had a swallow study and now it was mommy’s turn. Radiation egg sandwiches yumm. With Xrays of how slow my stomach emptied  which in fact is slower then a snail. I wish I could put it all in simpler terms for everyone. I did leave out all of the fancy names for you but those are the general types of test that doctors use to help see your insides.

Over all I do well on my new diet (um lifestyle ??) It has been two years but I’m not giving up coffee. One cup a day and I don’t even finish the entire cup some days I requie two cups but I chase it down with tums and ppis after words.   I drank more caffeine and that caused other issues I have to limit the amount of caffeine and acidic drinks pop coffees teas.  I just can not think about stopping the caffeine cold turnkey I have managed to stop all pop. Coffee though it has always been there for me and helps keep me functioning it even helps relax me. . I am sure it is not good for my calcium levels but we will talk about the calcium topic for another post.

Blended foods have been my best friend when it comes to me eating. The emotional toll in social gatherings sometimes is hard to handle everyone get’s to eat what they can and I’m over here trying to find things I can chew down to mush. I am not going to share with you a list of the foods I can’t eat because I have to focus on what I can eat. Let’s just say that with out eating foods I can’t eat there are days where I feel weak and tired and I am in so much pain then there are days when I am doing well. It really does not matter what I choose to eat or drink to be honest flair ups happen if I eat well or not.  But if I go out and eat a full rack of ribs and a coke you can expect to see me in the ER.  My fear and concerns are what if this was something that was neglected on my parents end. I was sick as a child but no one can tell me why. All my life I have felt like they never cared enough to bother and that alone makes me the momma bear that I am when it comes to my child. I want to know why this happens and what I can do to help her. So we have had test after test and doctor visits after doctor visits we finally have some answers that she has cebreal palsy a mild form and that probally also effected how she was able to eat too and how high her body matablizes food. I mean the kid can eat all day if I let her and she would not gain a oz. She just grows she’s getting very tall but she’s skinny. High protines and fruits with Ps have have been our go to. Peaches, pears, plumbs, and don’t ever give her a prune ha I can’t say I blame the kid on that one.

Back to Bella we have to set up an appointment with the gasterologist that’s the poopy doctor and see if Bella has the same things going on that I do.  So far I don’t see any other issue other then constipation and GERD. So this summer we are going to play catch up on Doctors visits. I feel like this summer is going by really fast and didn’t it just start ?  We are on a new routine and behavior chart and that also plays into a factor of her eating habits changing form the high grain foods that she eats at school next year I am considering having her bring her own lunches to school.

The other trick we have is eating at regular times and keeping foods that are calcium enriched high in protein low in fat have been best for both her.

For myself I have a diet that is what I call the gasteroparies diet.



Have you had feeding issues with your kids or yourself ? What about teeth issues ? What do you guys do to best cope?


If it has been helpful like comment and share this page ..

Who was the FIRST person to get tested for 22q deletion syndrome?



A reader asked some questions for me about 22q and my personal experience in a comment on a blog post I wrote recently.

Jackie asked me a few Questions.

What made the first person get tested?

At first I thought she meant my family right ? so I started my answer the first person in my family who was tested was my brother Chris after he ate turkey one Christmas he was rushed to the ER he had convulsions (seizures) after many test the doctor decided to run a genetic test called a Fish test because that is what is used to find or in simple terms fish for what the nice people down in the blood lab look for.  Like looking in the dark and then finding a fire fly. It glows and shows if you have 22q and if you don’t have 22q it does not show. There are other types of testing out there but I wont get into that here.  Basically in simple terms a fish test shines a light on your blood and if a Genetic Dna marker shows up and it glows that means that the Fish test is positive for 22q. After your done reading this post you can check out what 22q is by looking at the top of my page and click on the Tab that says what is 22q?

Back to when my brother was tested he was also given a lot of other type of test one was a full blood panel that day my brothers calcium levels were very low and that is what lead to his seizure. My brother started on hypocalciuma treatment weekly blood draws and then put on a iron supplement called ferinsol (Iron) and the other was called caltrico a chalky liquid medicine.

As my father and step mother continued to have children my sister was born and she has 22q also because like my brother she had a seizure and started to turn blue. I was there for both of these events. As a sibling it was scary at the time I didn’t know I too had seizures when I was little other then when I was born. I was told I was sick but it didn’t dawn on me I too could have it because I had a different mother and my father was so sure it ran in females. In fact my father got tested and my step mother got tested and my fathers test results came back positive  and my step mothers came back negative. My younger sibling was born he also had a seizure do to low calcium but they knew to test him for 22q because of the 50/50 chance of him having it because my sister brother and father had it. After my younger brother was born my step mom begged me to get tested  I got tested finally after I met my husband as we were talking about maybe someday having a child. I went back to Toronto to get tested and found out I too was tested positive.

I was rather puzzled and perplexed at my diagnoses because I was healthy like a ox nothing was wrong with me. In-fact I ran a lot and worked three jobs before I met my husband I passed out sometimes but usually it was from over exerting myself.

Not one thing (at the time) showed any symptoms.

I was seen by every doctor, heart doctor discharged me told me to come back when I had issues as did the endrochronist I had so many different kinds of thyroid test because someone kept pushing me to get tested for those issues and I did get tested nothing was showing up other then a deletion.

My only issue is I am 32 years old and I look like I am in my teens. I guess the fountain of youth is in a missing piece of Dna and scientist haven’t discovered it because they are too busy trying to enlarge things. Yeah I went there it’s my blog !!!

I had no learning issues infact I was in advance classes and general education. I had have speech when I was little but do to ear issues. sure I had ear operations every year but kids with out this disorder get tubes put in their ears when there ear burst. Then I had Bella and my world turned upside down. Open up my heart and mind on so many levels I can’t even begin to explain. I started to have hypocalciuma issues while I was pregnant, I had a high risk pregnancy and I had a very high risk complicated pregnancy. In-fact they had to break my water, I almost didn’t make it, I passed out from how much blood Iost from internal hemorrhages. I don’t think I fully recover because I have gasteropaies now and a ton of other health issues involving my stomach. On a plus my calcium levels now is always normal since I had bella my teeth started to de mineralize though do to reflux and stomach issues. I wont get into the goory details about that but  the other parts of my blood work those too are normal. I also most recently got diagoned with cataracts I guess when you turn 30 you start to fall apart with or with out a chromosomal disorder but especially with a chromozonal disorder your body starts to change and as a women with this disorder it’s not easy knowing what came first the disorder or the symptoms as there is no cure you can only treat the symptoms.

I have post that I have written about my healing process my discovery and my story is shared on this blog to help others who are out there so people like jackie know what to look out for and can help others they work with or come in contact with and help spread the word.  I want to thank Jackie so much I will leave her last name out to protect her privacy but I think she had some very good questions and I know others have questions that are out there.


Then I thought what if Jackie was asking not the first person as in my family but the FIRST person to get tested and was the discovery an accident ? how old were they? I can go deep here guys? does anyone know the answer to this one? I know I sure do. I have a few buddies online who I made friends with who are older then I am some are in there 60’s. I don’t even the EXPERTS know this one ? or is it all hushed hushed and kept safe some place in a secret volt?  and if your a EXPERT please comment and explain this to us I would love to feature Experts in the filed of genetics bi medicine or any other Expert on 22q on my blog. :)


All I know is what I experience and I can share with you my answers they might not be the answer you were looking for or hoping but if you have answers or questions comment below? I want to know your thoughts!

What’s your story ? What’s your question for me?

comment below and maybe your question will be the next one I answer.


Adult with 22q deletion syndrome, DiGeorge syndrome, Velocardiofacial syndrome  some other helpful websites.


IEP Positives and Negatives and Hopes for the future-school and 22q kids




Over all we have had success with Bella’s IEP only there has been one issue that is always on the agenda and always get’s pointed out how much better our Bella would be doing if she was in school on a regular basis. This year Bella has had a lot less absences then any other year she’s been attending school.

Bella’s only 8 years old and on any given year will never win perfect attendance award. Simply put there are too many services Bella needs example Ot and Pt twice a week, speech once a week and then you have gasterologist visits, dentist visits, eye exams, therapist she sees twice a month for her ADHD issues, neurology appointments and I can go on.

Not to mention that in the winter time Bella get’s infections often which can lead to her having seizures that lead her to fall a sleep in class. Did I mention Bella also has sensory processing disorder and learning delay issues. yet being absent is the reason she’s behind. No it’s the fact that the teachers have no clue how to education a child with Bella’s special needs and I have even shown them the book educating children with special needs and no one was interested in it. They rather learn watch and observe and waste everyone time.  Instead of having a parent who knows more but because I don’t own a PD I can’t possibly know what I am talking about.  The one thing Bella loves about school is millage club and the few friends who don’t pick on her which usually are the boys she hangs out with.

In order to make my point that my kid is developmentally delayed by 1 year do to her having 22q a rare genetic disorder that both her and I have she shouldn’t be in 2 grade but she must be put in second grade do to her age. We main stream her with an IEP because Bella does not meet the criteria for special education only for special education support services. Bella can do the work just fine one on one but if you put Bella in a class room her ADHD likes to say hi to the world as does her sensory processing disorder she’s sensitive to lights sounds and touches. Which is common for children with 22q deletion syndrome. I as a adult to this day even have some of the same issues. I can sit in a class room and do the work but I’m sure my class room in Toronto was not as large as what Bella has to endure she usually in a over loaded class room infact it’s so over loaded every year a letter goes out asking parents if they would like to have their child attend another near by school and every year I have said no. The support services Bella get’s are only on Tuesday and Thursdays. I feel my daughter could benefit from those services every day of the week. Often on Tuesdays and Thursday’s are days that doctors like to set up appointments or only have appointments available Thursdays also seems to be the day that any field trips happen or they do fun stuff what ever happen to the other days of the week which is something I will be addressing when I speak with my advocate. I had to get a advocate from the ARK a expert who works with parents and helps sit in and speaks up for the needs of the child during IEP meetings. Just having her I felt comforted because my experience is not in IEPs I’m just on the first journey and the years go up the process get’s more complicated I know I will need someone by my side speaking on my behalf keeping me in line and checking that I am following though on my end as well as the school is following in on their end. My child will miss some days of school next year it’s not like I plan them but hey missed days happen. Over the summer I am working on Goals to meet those request that they want me to have Bella there in the Am and then I can take Bella to her doctors visits. Here’s one little glitch I don’t drive. I rely on medicade transportation or if my husband is off work he takes us but usually it’s just Bella and I attending all of these appointments while my husband brings in the money that helps pay for our apartment and bills so we don’t end up back living with friends  read about my experience in poverty.

Over all there are a lot of great goals for my daughters IEP but I feel there isn’t the time that is needed during the IEP meetings to extend a conversation about changing those goals and meeting Bella where she is at vs where the school wants her to be at. It has taken some time but I feel finally we have a slow start and I refuse to start over from scratch after all of the hard work we have done.

Next year is going to be different I am going to speak up more and I am also going to be more active I’m ready to have 2 grade for Bella be the best year for her. No more melt downs over friends picking on her I wont allow it next year I found ways to handle that myself that has helped this year. No more she’s behind because she’s been absent and that’s why she’s behind nope I am speaking up and I have a list of resources that support me and I know more of what to do this year and I’m excited for next year to be less stressful for Bella.

I’m setting up doctors appointments this summer and I am ready for when Bella starts school for 2 grade.  No more Medical vs educational bs. Medical and Education are equally important and I know just who to speak to if I need extra back up.  Someone has to speak up for the children who have multiple health issues who still need a education. I have even been able to do work right at home it’s not like they are ripping up fogs in 2 grade and even if they do I am sure we can figure that out here too.

I have been lucky that the special needs teacher is understanding and is qualified to teach Bella the teachers she’s had have been great but lack of communication unless I communicated first has been and issue. I have had times Bella has been indoor at recess for her ADHD issues acting up rather then her getting out her energy. The school and teachers really do care and mean well but are only able to really teach children who are at level or advance level they are not equip to teach Bella and meet her needs is my fear so my goal for next year is to address these fears in a productive manner and hope for a smoother year over all for Bella and everyone involved. I do have to say I can’t thank them enough though for all of their efforts so far she has picked up on things doctors have said she wouldn’t be able to and that’s something I am enjoy about the school and the staff you can tell they really do care other wise they wouldn’t get so worked up just like I care and I get worked up we just have to have some kind of middle ground so we can balance everything and meet Bella’s needs.

For more information please pick up a copy of a book from Amazon called educationg children with velocardiofacial syndrome or missing genetic pieces.

You can also learn about your rights as a parent regarding your child’s special education by checking out writeslaw website.

Mind you I live in Michigan and services here are different then where you may be from but what are your experience with IEPs and the educational system vs medical system ?

leave a comment below and email me at



Interview with another adult living with 22q shout outs to Michelle Padilla.

22q Awareness

Meet my Friend Michelle AKA Sis who is an advocate for others who have 22q we have a ton in common besides both of us having 22q we both love ShouStarbucks

 The Awareness Show

I don’t remember when Michelle and I met. I just know we have stood by each other though a lot of our struggles as well as celebrated our joys. We help one another like friends often do. Michelle is studying in the Human Services field and she displays empathy and being passionate towards others she going to go far and make things happen.

We both have one major thing in common that connected us oh so many years ago that is we both have a rare genetic disorder called 22q11.2 deletion syndrome.

Michelle is an 22q advocate just like myself only I write to get my message out and Michelle while she likes to talk :) 

Michelle has an awareness show where she interviews Guest on her show and plays some awesome music. 

I will let her bio speak for it’s self she’s rather impressive and is as sweet as can be but like me if you get her upset we have one anthers backs. 

The Awareness show features Michelle L Padilla. She is an advocate for 22q11, also for people who have disabilities and loves to promote awareness were ever she goes.  Her favorite thing to do is to go to Starbucks and get a cup a of coffee before she starts her day.

She loves all kinds of music and grew up in the 80s, so she likes classic 80s cartoons (like The Smurfs, Rainbow Brite, Strawberry Short Cake, etc.). She also loves 80s movies like The Breakfast club and Back to the Future, to name a few. Her favorite artists are Journey, Aerosmith, The Beatles, AC/DC, Michael Jackson, Heart and Blondie. Growing up her dad used to quiz  her on the different music that was playing on the radio. People tell her that she has the heart of gold, which she gets from her grandmother.

She loves to hang out with friends at the mall and at the Toro Sports Lounge when she can. My favorite color is purple and loves to play Candy Crush Saga on her phone. She often finds herself on FaceBook promoting KDHR and her other causes. She likes baseball, basketball, some football and loves wrestling. Last she loves spreading awareness through out the City of Carson. Make sure to check her out on Tuesday afternoons.

  I met many other online over the past 10 years and if you would like to be a guest on my blog just send me a email at together we can share your story and spread the truth that adults have this disorder too and have voices that need to be heard. 


Spreading awareness for 22q advocate Michelle Padilla. Check out her Radio awareness show that she host.

Spreading awareness for 22q advocate Michelle Padilla. Check out her Radio awareness show that she host.

A new brand new show This is about awareness and causes about the different kinds of syndromes that are out there. Michelle will also be playing music as well from classics to current . Michelle is here to promote awareness and causes that are important to people in everyday life.

The Awareness Show is great and this summer hitting air waves every Thursdays 3:00-4:30 got amazing guest for the summer o phone in 1 (424) 785-0278. Let Michelle know if you want to be interview or guest send her a pm and she will set  it all up.

Check her out in action click here.

Do you know someone out there with a rare disorder or are you another adult with 22q and would like to be featured on my blog. contact me directly by email at

Remember you can always leave comments on my blog, you can like my post and share it with your followers on social media such as Facebook.




22q awareness video I made

Leg, Calf, and Thigh Pain cerebral palsy and 22q deletion

Last night Bella woke up at 1:30 am. Leg pains associated with having 22q deletion syndrome and a mild form of cerebral palsy is the cause. We are one of the lucky families to know and understand how to treat the pains, forever thankful for the trips back and forth to the U of M and now and have names for this type of leg spasms.
Bella cried about her legs being so tight and in so much pain Bella was screaming from the pain. Bella’s daddy got some yummy smoothie made he blended up oranges and made a yummy creamsicle smoothie to help comfort her as she took her med a liquid iron. Bella and I were lying on our bed while I had rubbed lotion on her legs to work out the knots. It takes a special type of massage to work out these knots and because Adam does not like the feeling of lotion on his hands, I do the massages. I after all was at the U of M and shown how to do these type of massages to break loose those knots. You start with warming the lotion between your hands, tonight I am going to boil water put the bottle in the water and allow that to warm up the lotion kind of, like you do with baby bottles. I plan tonight to do the rubbing of the legs before she fell asleep but long and behold she fell asleep in daddy’s arms tonight watching tv and you don’t poke the bear you let it sleep. It is our little family joke.
Last night I was in tears because all of the doctor visits we have had and all of the things I have learned and achieved since being being diagnosed with 22q my self but that was 10 years ago. I do not have cerebral palsy. Bella’s Cerebral palsy is new diagnoses to us on top of her 22q11.2 deletion vcfs digeorge syndrome.  cerebral palsy is still feeling fresh and still discovering the ins and outs and not knowing how the 22q is effecting the cerebral palsy and vice versa. It’s frustrating to no end.

I only know that I cannot make the pain go away forever. That this is a pain she will endure off and on during  her life time.
The number of times she get’s up and cry’s is not as often as it used to be before I got the specialist involved and she is up crying in pain not every night like they used to and over time it has eased up but I thought about how many other parents have it worst off and I felt ashamed to be crying over being up at this hour rubbing legs instead of a sleep next to my husband.
As a mom watching your child experience pain you can’t cure makes you feel helpless frustrated and I felt like I have failed our child in some ways. Interrupted sleep makes everyone cranky and overall just exhaustion pure exhaustion as you are watching your child feel the pain and know that only a deep tissue massages will help ease the pain. At the same time you know the pain is still there lurking around for the next flair up to start. Wondering how much longer before you consider pulling your child out of school for a medical leave because of so many missed days at school because Bella is up at night some times on nights like this and she isn’t able to fully function during class the next day wishing and hoping to home school but you know in your heart of hearts that is not the way to go about this and it’s just a overly exhausted mother trying to rationalize things.
Bella was told by the clinical staff at her doctors office it was best to have her to stay home and rest tomorrow she has to stay home and will see the doctor tomorrow. I feel for Bella I really do. on top of 22q leg pains isn’t easy for anyone let along a feisty active 8 year old who loves to run cerebral palsy and jump and play with the other kids.
I used the Admia lotion and it really did the trick I am so thankful I get to actually do product reviews sometimes because I find things that really do work and Bella’s sensitive skin didn’t react to it. I should have given the Admaia lotion a raving review instead of the one it’s great type of review I didn’t think I would use it on her legs as often as I do now and how much it’s helped.

I used the lotion because I actually was able to rub the knot in her legs out a lot easier then I could had I used baby lotion it’s a creamer texture that isn’t oily or smelly. Tonight I am going to boil water put the bottle of lotion in the water, warm it up, and see how that helps. Bella said I worked out the knot and found the spot so I guess I did because she was doing a lot better today we had her spend the day in her leg braces playing xbox and watching Netflix and playing with her toys because she had to rest her leg and stay off of it.
Bella is on a muscle relaxer. I am not going to say what it is because that is not debatable here. When you post about what you use for your child other people tend to pipe up and say you need this or that and that is not what this post is for at all. We are doing what works for our child.

You know I am ok with things if not I would have typed hey what should I have done better next time or ask for advice. This is not that kind of post as you can see I am just typing our experience and helping others not feel like they are the only ones out there experiencing this.
Muscle relaxer it is a low dose and it does work but just enough to take the edge off.
I do not like medications. The side effects the chemicals the nasty taste in your mouth the take this med and then take this med after to treat this symptom it is like a Band-Aid to cover a Band-Aid without treating the core issues. We treat the core issues by having Bella on a few meds at low doses but as specialist prescribe them who know what they are doing.
I am not going to say online what meds she takes and does not take or what works and what has not. Otherwise, I will end up with a bunch of people running off getting prescriptions filled.
What works for one person will not work for the next when it comes to this rare genetic disorder and no two people with this disorder have the exact the same symptoms for the exact same reasons. Nor will treatment be the same for the same symptoms. There is no cure and its one thing I know 100% because I have it my siblings have it and my father has it, it being 22q.cerebral palsy  now that’s still new to me and I am still discovering it and the more I learn about cerebral palsy the more I feel like I did 10 years ago when I first got diagnosed alone and lost and confused as which direction to go with this. This reminds me why I write this blog in the first place. I am reminded of own personal passion to help others. I did find a girl who was so sweet on Instagram and she talked with me about how having cerebral palsy effects her and what has worked and what hasn’t she reassured me a few months ago I was on the right track even with the muscle relaxer and all the other stuff were doing.
I am more of a alternative health type of mom and feel that there is a place and time like this where the muscle relaxer has been a God send.
Since being on the muscle relaxer Bella has been able to sleep soundly at night every night minus a few times when she is overly active like she has been. Bella has been running and jumping a lot lately and of course breaking in new shoes she got for her birthday I am sure could also have caused some of the tightness in her feet as well as her legs behind her knees.
I guess you can call this my ramblings of one exhausted mommy brain. I am going to post this anyways and see how many other people have dealt with this kind of thing.


Bella’s very colorful Leg braces, 22q deletion syndrome and cerebral palsy

On and you know the thing that covers her toes she lost one and I have to talk to her doctor and get a new one I have no clue what that piece is called by the way!  A toe shield/ protector ?

careful By Randy Anderson-#amreading

Disclaimer: I relieved a copy of this ebook in exchange for my honest review.

Ebook review Tomoson

Ebook review Tomoson


For two decades Tyler Gibbons has been keeping a secret from his family. At the tender age of sixteen, Tyler embarks on a student exchange program. Sent to the Andean city of Ambato, Ecuador, he finds daily adventure as he tries to fit in at school, connect with his host family, and navigate through a world of beaches, volcanoes, and jungles. But tucked deep inside this year are events so profound, so unexpected, they forever shape the man he will become.

Now, 25 years later, his mother pulls these soaring tales from her son, exposing, for the first time, the source of a deep unhappiness. While these memories contain the wounds of an unresolved past, they also possess the power to heal his painful present.

Tyler get’s a call from his father that his mom is in the hospital and then he starts to tell his story to her.

 It was very well written and the characters where developed very well. This book is very emotional. . 

I also loved how the bond between mother and son got stronger and how she helped him heal.

there are some tragic events in the story that brought about a few tears because I can relate in so many ways. I too had a past that I needed healing from and answers too and I related to both the mother and the son on different levels. I warn you will need the tissues.  I kept turning the pages in this boo page after page.

The author takes us back an forth between present and past, where you will get a picture of everything. The novel is about a 40-year-old guy, Tyler Gibbons who is compelled by his dying mother  who is in the hospital and his father calls him to inform him about his mothers. Peggy is the one who is to narrate the happenings during his stay in Ambato, Ecuador. Tyler goes and stays in Ambato for a year as a part of a High School Exchange program when he was 16 years old. The secrets he has been guarding for 25 years finally come out. A beautiful story I believe will resonate with anyone whom has ever gone or wanted to go to a new country on student exchange.
**Please note, there are some LGBT themes (the MC falls in love with his best friend)**

Five out of five stars.


Bella’s birth Story

Bella’s birth story


By Amanda Ripsam




That was the title of the birthday post I shared with everyone a few days ago.

This is a post that I hope to share some day with Bella a story of her Birth and her journey.

My WHY for me to keep this blog going is Bella.

I started this blog to share both her story and mine.

The delivery was 18 hours long, I pushed for three hours and Bella was born just in time for dinner. I guess she knew what time the cafeteria closed.  My husband and mother inlaw and entire family was there and in and out of the hospital room until the really hard stuff started. I started to hemmerage so badly, my water had to be broken and sheets upon sheets had to be used. I was loosing blood and I didn't know what was going on with me. It was until a year later when I was more stable did people tell me what happen. I almost didn't make it I passed out for a bit came though and had a room full of doctors and nurses and their medical students in the room and showing the world my nether regions. I had answered so many questions doctors had and they wanted to learn more about the rare genetic disorder and why I was demanding a FISH test Now and yesterday. They wanted to know why I refused amino testing because the high risk pregnancy I was all ready at I didn't want to complete my birth any more then I had.  The entire ordeal I had a strong supportive midwife my husband and family and friends who I am so grateful for but some of those memory's are not fully clear there are details here and there that I can not account for.  Bella spent time in the Nicu for a week and a half almost two weeks. I was in the hospital for a week recovering.  Bella for her feeding issues and to await the FISH test which was tested positive which I knew she would have but still the guilt and fears were all there that a typical parent would have discovering what is to come next.  What came next was test after test and calcium treatments and feeding study's and lactation consultations, home care nurse came to visit me and showed me some healthy cooking skills because I gained a lot of weight. At the start of my pregnancy I was 135 pounds at the end of my pregnancy I was 192 pounds a number I will never forget. I have had a weight roller coaster since then and have been diagnosed with my own eating feeding issues called gasteropaires. I have multiple gallstones, kidneystones, cysts and gerd and a massive hitial herina and before I could get all of that treated I thought it was Irratable bowl syndrome becasue that is what the doctors told me I had. I since  have new doctors who are trying to help the best they can.  I was down to 155 it took two years but I did it then I started to get sick and all the feeding issues I mention aoved started to show up and the past two years I have struggled with my weight from 165-177 I am having to really struggle to loose and just get to a healthy bmi to get the extra weight off the hital hernia. While I had been waiting for the mallory wiess tear to heal up I started this blog and that's when my health started to become manageable.  Self care started to finally happen and I am able to take care of my own issues now that Bella is stable and we are in a stable environment.

Back to after Bella was born.

After our daughter  was born she had to have weekly blood draws. Bella was diagnosed with the same disorder I have because I knew of the 50/50 chance of passing 22q on to my child.   At birth she started to turn blueish in skin color and she trembled a common sign of hypocalciuma which is low calcium levels.  Bella had to have the blood draws every day, then every week then on to every month and now it's every year.  Having a history of hypocalciuma leads to seizures when the levels drop to low.   I know this because that is what my siblings had when they were born they too have 22q. I was blessed to know what to look out for when it came to my daughter.

The regular blood labs are to see if we needed to up her calcium medication called  calciatrio (sp?)  dose or bring it down.

We saw numbers of doctors every week. Now we don't have to do that since she's 8 we have very few doctor visits and we have a specialist team that over sees along with an amazing pediatrician who is local. Now we just do routine check ups and see doctors as needed.

We deal mostly with her seizures which I'm so grateful are  vegago vesso seizures and the doctor ruled out the term seizures but have called it seizure like in relation to her sensory disorder and spatic issues she has with her cerebral palsy.

When Bella was born she had feeding issues and had to have a swallow study. Bella in order to thrive  had to have formula I couldn't breast feed. I tried so hard all the campaigns out there that breast is best and I so totally wanted to breast feed her I felt defeated depressed and heart broken and even felt like I was broken there was something wrong with me. Bella had trouble latching on to feed because she has weak palate mussels that I didn't find out until just this past summer. I did have something wrong with me I was a overly tired exhausted momma who couldn't' find courage to say I need help and I was feeling alone even in a supportive family environment I felt like a outsider because I was failing as a mother failing to be able to provide to my daughter the nutrition she needed. In a attempt to provide Bella some extra nutrition I had to thicken her formula with rice ceral and add in the breast milk that I pumped. Bella is a strong healthy child despite her cebreal palsy and spatic and other mild multiple health issues.

Before we discovered the wonderful team at the U of m we saw a few different specialist at Helen devo's hospital where Bella was born. We thicken the formula with rice cereal to help her gain weight. It was a long week in ICU but I was so greatful it was just a week other parents were there much longer and Icu is a scary place to be.

Move forward now to her 8th birthday which is this Sunday April 27 2007 and she's a funny smart beautiful girl who at first glance you would never know she has had multiple tests, multiple dr visits, multiple specialist and evulations after evulations were still in evulation stage. She has touched the lives of so many people with her warm greeting of everyone we meet, I'm not as out going and open to new people as she is but I do show her it's ok to be friendly. Her character has started to really develop she is strong willed like her momma and a fighter like I am, maybe that's do to the chromozonal deletion but I encourage it as long as it's within respectful limits. Bella is my reason for being my reason. She is the reason I'm crazy busy and feel like a chicken with it's head cut of some days and my reason I gained so much darn weight but I wouldn't trade her for anything.

My hope is when Bella get's married I can pass this on to her on her wedding day and she will know all of the love and all of the struggles I have had to endure with her drs and schools I haven't end touched on that one here.

The challenges we both face together as a family we made it though together every test every procedure every  ear operation, every scary thing we have had to experience and learn along the way I and her daddy have had her back. We may have moments in her life when she learns about her having 22q and I will have to explain it to her and I will be there to help guide her and continue to support and encourage her to always do what she wants no matter what anyone or dr says she can't do. Bella is able not disabled because of this disorder Bella is able to if she wants do it if she trys.

Medical diagnoses especially when there has been multiple health issues is always a struggle but were strong and we can move mountains together side by side at each others hip. Which may not always be the case as she is getting pretty tall and soon she will tower over me. As she grows-older and the snuggles and kisses in public will soon stop but our bond we have will never be divided. Daddy and mommy love you Bella and we are so very proud of the young lady you are becoming. There is so much more in you then your health issues there's strength love and kindness and beauty and I never want you to forget it.

Motivate your child action plan-a review



Motivate your child action plan:

Crafting the unique strategy to propel your child forward. Dr Scott Turansky and Joanne Miller, Rn Bsn. Founders national enter for biblical parenting.


I agree that you do need a plan when it comes to parenting your child. You need to have a list of rules and boundaries of what is and is not acceptable in your home.

Over the next little while I am going to take some of the advice and tips from this work book and see what changes I can make in my own home. There are 150 pages and 12 chapters. The pictures in the book are very creative and cute illustrations.

My favorite chapter is called spiritual energy provides strength.   I find I am just too often busy trying to make it though the day and having different focus or a map to get things done differently is a nice way to read and work together with hubby when he comes home. I  look forward to reading this book with my husband. Hubby and I love to listen to audio books so this book is a good fit for us.

I am going to go though the steps in each of the chapters and see what works and what does not work for our family. I think with any parenting book you have to take what fits and what does not fit for you and your family. I have picked up a lot of books on this subject I do like work books the best and this book seems like it’s a easy to follow along with and there is even a audio part to this book where you can down load the audio sessions from the website. check out the link if you like and let me know what you think.  I think this book would be a great book to have for a group of parents to follow along with for a parenting bible study.


Product Description


Dr. Scott Turansky coaches parents and their children every week in his office and on the phone. The Motivate Your Child Action Plan book gives parents the tools to implement the same process to produce change in any family. Instead of relying on reward/punishment models, Motivate Your Child Action Plan helps parent use a heart-based strategy to develop a tailored plan for each unique child. Twelve audio programs can be downloaded to the device of your choice which contain guidance from Dr. Turansky and Mrs. Miller on the development of your plan. This book is about moral and spiritual development in children and is based on a study of the conscience in the Bible

I am giving this book a 5 out of 5 stars because I really enjoy work books and audio books



Disclaimer:I received the product the mail for free in exchange for my 100% honest review.




Carefree panty liners-

Carefree panty liners-


Carefree liners are perfect size to keep in your purse. The liners are comfortable and thin and don’t show though your clothes.

Bonus you can wear the carefree panty liners with yoga pants at the gym. Pick some up at your drugstore or grocery store.

I loved receiving the Carefree voxbox Thanks Influenster



Review BBflawless skin Jergens lotion- Influenster review

This is me. I am 32 years old you would never know unless I told you that I had 22q


#BBflawless skin


Disclaimer: I got received full size product in the mail in exchange for my 100% honest review.

#BBflawless #skin

#BBflawless #skin  I was so excited I took a picture as soon as I opened my box.

I have fair sensitive skin being a redhead naturally so I am always the best type of person to test and try new products because if I don’t break out chances it’s pretty good stuff to try.

I have not used Jergens BB lotion but I do love the extra dry skin hand cream  by Jergens  I was very excited to get a invite to take part in a product campaign.

Jergens makes wonderful lotions I have used other Jergen products in the past and my sensitive skin has always done very well with Jergens.  It’s light weight and I love the extra sunscreen in the lotions.

I received hand, face and body cream as part of a Influenster campaign.  I love how flawless the lotions makes my skin feel and I don’t end up breaking out.

My hands and face and legs are very soft thanks to Jergens BB lotions.

Comfortable Swim Goggles For Kids – Frogglez® Review + Giveaway

Disclaimer: I received one or more of the products mentioned above for free using Regardless, I only recommend products or services I use personally and believe will be good for my readers.

Frogglez® Goggles are the worlds most comfortable swim goggles.

Featured on the Today Show, in Parents Magazine,ect. The feedback is amazing – everybody loves Frogglez® I checked out the Frogglez goggles Facebook page and bed bath and beyond even sells these goggles they are really doing well in sales and I can see why.

When Bella and I went swimming with some friends of ours over spring break I had a lady ask me where I got these goggles and I was so excited about them and telling the lady I do reviews on my blog she was like how did you get those ? I can all ready tell these goggles are a hit because the goggles didn’t pull on Bella’s hair at all. Bella as you know has sensory processing disorder it’s part of the many symptoms from her having 22q11.2 deletion syndrome and is sensitive to light sounds ect but I was excited to have her try the goggles. The time in the tub and she was having so much fun fishing for her toys in the tub and was excited water didn’t get in her eyes.
Now at every bath time she wants to wear these goggles. They come with a pair of goggles, but you can easily swap them for your own pair. These are great if you have prescription goggles or another pair of goggles you all ready love but want better straps that wont tangle in your hair. The velcro makes it easy to swap out the goggles.
They stay in place once they are on, Bella loves that she can use these with a ponytail too. They work great for both boys and girls and are available in different colors. I love that about these goggles Bella picked out Purple but they make them in Green Blue purple red and so many other colors. Bella can put them on and take them off with out my help, Bella loves the feeling of independence these goggles give to her.

I am so glad to be writing this review I am even more excited to be able to give a pair away to one lucky reader. At first I couldn’t get Bella into the water now I can’t get her out of the water.

You can find Frogglez on Amazon for only $22.95 and free shipping with Amazon Prime.


Ebook – Green Smoothies: The Weight Loss & Detox S Jenny Allan Review

<a href=”” rel=”nofollow”><img style=”display: none” src=”” /></a>Disclaimer: I received this ebook in exchange for free for review purposes. My opinions are 100% honest and no way influenced by the offer of the book.

Ebook – Green Smoothies: The Weight Loss & Detox S Jenny Allan


As you know part of my diet is smoothies ok most of my diet is smoothies and soups. I have gasteroparies. I am always looking for different ways to  make smoothies I usually make these smoothies with added protein powder.  I have even enjoyed sneaking in fruits and veggies and getting the kids to enjoy spinach they do not know they are enjoying spinach they think it’s green smoothies it’s all about the magic or words. See how much nicer the word smoothie is vs spinach. The kids get the nutritional values from the fruits and veggies and it was easy for me to find the information in this book.  There is 40 different recipients to choose from and it even has nutritional values.

you can find the book here on Amazon

I rate this book a 5 out of 5 stars.<a href=”” rel=”nofollow”><img style=”display: none” src=”” /></a>

E book – Abigail and the Tropical Island Adventure Review

<a href=”″ rel=”nofollow”><img style=”display: none” src=”” /></a>Disclaimer:  I received this ebook in exchange for free for review purposes.  My opinions are 100% honest and no way influenced by the offer of the book.

E book – Abigail and the Tropical Island Adventure Review

61GDhF7+YfL._BO2,204,203,200_PIsitb-sticker-v3-big,TopRight,0,-55_SX278_SY278_PIkin4,BottomRight,1,22_AA300_SH20_OU01_It’s cold and rainy outside and Abigail can’t go out and play. She remembers some of the places that she visited with her magic bike where the weather was always warm. She goes to her room and begins to read through the magic book and finds pictures of a tropical island. If you’ve read any of the books about Abigail’s adventures, you might know what she said after seeing the beautiful island. “Take me there let me see: show me where I want to be,” and immediately found herself flying on her bike over a chain of islands.

Tali Carmi, the author of the Explore the World Children’s Book series, loves to weave stories about other countries and other cultures. As the children are entertained by Abigail’s adventures, they also learn interesting facts about the place Abigail flies to on her bicycle. In the fourth book of the series, the Tropical Island Adventure, they will hear about oysters and very rare pearls, star fish and traditional island dress. Your 2-8 year olds will love the colorful illustrations, and wonder who Abigail will meet and what she will discover in her next adventure.

As you read the book to your non-readers, you are helping your children become familiar with exotic locations and widening their horizons as you tell them about other cultures. You can find all of Abigail’s Adventures on Amazon by searching for Tali Carmi, the author. Abigail and the Tropical Island Adventure is found on Amazon with this URL:

I am reading this series with my 7 year old daughter Bella loves reading books on our tablet.  <a href=”″ rel=”nofollow”><img style=”display: none” src=”” /></a>



The Wisdom and Peace of the Teachings of the Tao Te Ching a book by Matthew S Barnes. Review

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Disclosure: I received this book in exchange for a 100% honest review.



I have a strong belief in faith and spiritually that’s what helps to keep my mind centered and focused. What works for me may not work for you and I am ok with having differences of ideas as long as we can respect one another and not try to force me to change my mind on my spiritual path because my path is different then your path and I love that about people in general.

It makes me sad when people get upset and bicker over what is suppose to be a personal journey how can one argue that my journey has to be exactly like yours in order for us to have  a peaceful friendship. Matthew S Barnes writes about how he was able to get his messages across with out basically brow beating it into a person. Ok not the exact words but you get the point I am trying to make here.  I often even find this bickering in the rare genetic community of what research they have read or not read vs what teachings real life examples can teach of how to live and cope with stressful situations. Rare genetic support or lack of it is just one of many challenges I face.

I am a big believer in spiritually and how medically your mental state helps your body mind and spirit heal. Part of my healing process involved a lot of mindfullness and peacefulness and self help/discovery books.  You can understand now why this book is right up my alley.

I am so glad to be able to review this book and suggest it to mommiesquietplace readers maybe it will help readers answer some questions and take time to reflect and work towards a inner peace.

The Tao Te Ching is an ancient spiritual guide book similar to what the bible is for Christians only this is a book used by the Buddhist.

I am one of the rare open minded folks who can find the teachings of the Tao Te Ching just as helpful in life as I do the Bible. Both promote peace love and hope.  Both books are written with the idea and concept of peace. You can choose to argue your views but where would that get us? I am still going to think and feel my hearts desire just as you feel and think about your own hearts desire.

One example provide in the book talks about the Way of life or the it if you go against it such as eating junk food all the time promotes illness and whining, complaining and wishing it didn’t isn’t going to change a thing about the effects of what eating junk food often will do to your health.  The simple laws of life says everything in moderation and take care of your health.

on a mental level the way of life laws work like this  just like being stingy, self centered or mean makes you miserable as well as those around you. You reap what you sow. Or you get what you put out into the world.

If you followed the way isn’t about a God it’s about action and the laws of life we must talk the talk and walk the walk and go with the way instead of fighting against it.

What I loved about this book is it is each of us that walk our own path. The fear that if you talk about God or Heaven that there would be more bickering over the meaning of religious passages then trying to actually walk the path. (wow I have finally found a way to express my view points within the words of the teachings of this book) Each domination believes in there own interpretation of their Bible often spends more time arguing over the correctness of their position than actually trying to walk the path.

I kept reading this book I couldn’t put it down I won’t get into more details because I caught myself rambling on about much I liked this book.

I don’t want to spoil it for you. You can find the book on Amazon.

5 out of 5 stars. <a href=”″ rel=”nofollow”><img style=”display: none” src=”” /></a>


First day back after spring break

Hello, I am testing out an app from my phone and I am updating everyone because it has been a entire week with very little post from me.  I have a giveaway going on my blog check it out some cool tank clogs.

Bella had a fun relaxing break. We hung out with friends, went swimming, and Bellas grandpa aka Adams dad is visiting for a while.

Bella had a trip to the U of M and saw the Ent Bella hears just fine its the listening that needs work.

Bella lost her glasses at the park and now we have to get a new pair.

First day back to school was easy and uneventful. Bella even did all of her homework with out any struggles.

I had plan to post daily on spring break we just got too busy.

Bella completed her firest smester of speech at western. Bella practice sh and s sounds was able to speak out her mouth and not her nose.

We are celebrating Bellas birthday this month on the 27. Bella will be 8 years old. I will post a birth story of Bellas birth sometime soon a lot of people have asked me what was it like when I was pregant and how the birthing process was which I will be glad to share.

Bella is surfer of the week at school we did a fun little project. Thursday I plan on having lunch with Bella I am excited.

Thats how our break went. How did your spring break go?










Enter to win-Toddler-adorable-tank-clogs-review+giveaway

<a href=”” rel=”nofollow”><img style=”display: none” src=”” /></a>

Disclosure: I received a sample product to help facilitate the review. All opinions stated are genuine and my own.


I am so excited to announce my first ever giveaway here on mommiesquietplace. I have celebrated my 1 year blogging here on wordpress. Before that I blogged for a year on blogger.

I finally have webhosting and I have my domain. I am a very happy blogger.

In celebration of mommiesquietplace successes over the year I am rewarding the loyal readers who have always been there and supported my blogging journey.

Check out what I got in the mail this week.


Enter to win-Toddler-adorable-tank-clogs-review+giveaway

Enter to win-Toddler-adorable-tank-clogs-review+giveaway

From the sponsor:

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Get ready for Compliments from Friends and Acquaintances. See the Joy on Your Child’s Face with These Adorable Clogs.”

Sick of the uncomfortable, boring shoes your child can’t stand? Annoyed at the battle it is to get shoes to stay on your child’s feet? Put all that in the past… Now they’ll absolutely LOVE wearing their new TANK CLOGS! They’re super comfortable, stylish, and adorable. YOU DO NOT HAVE TO BE IN THE MILITARY TO SHOW YOUR PRIDE AND STRENGTH – YOUR BOY WILL WEAR IT ON HIS FEET. This is a gift you’ll both love!

*Give These A Try – Your Child Will Love Them or we will Give You a Refund.*
If for ANY reason you aren’t happy with your clogs, we’ll refund you. Give yourself the gift of having your child’s feet fully protected without the battle and frustration of conventional shoes. If you’ve tried other products (even other kid’s clogs) but weren’t happy with the results…you NEED to give ours a try!

NOTICE: BEFORE PURCHASING CHILDREN’S SHOES ONLINE OR IN A STORE… Kid’s clogs are NOT created equally. Please don’t waste money on cheap imitators just because the price is lower. Clogs that are cheaper in price are NOT a better deal! Why put your child’s feet at risk? We have the best quality AND value as you’re getting a quality-made product for an unbeatable price.

You can find these shoes online here

for purchase for $19.77 with free shipping with Amazon Prime

You can also enter to win a pair of these adorable army tank shoes in the mommiesquietplace First Ever Giveaway!

I am so excited to see who wins.

I received a pair to review and I think the tank shoes are so fun to play with.

I have a little girl who is 7 she is no longer a toddler but thinks the tank shoes are fun and wishes they came in pink and white army colors for girls. Bella plays with the shoes on her Stuff animals because I ordered the wrong size. I ordered a size 5 it said size 22 which is the size of my palm so great for a little boy. I have a friend I am going to give our shoes that we got to review to. I just know my friends son would love them.


Open to US only.  Void where prohibited. Must be 18 years of age or older to win. Winner will be emailed.  You will have 48 hours to respond or a new winner will be drawn.


Check out my Fan page on Facebook and also comment on my blog for a chance to win.


They are so super cute, they come in a marbled green or a marbled blue – I received the marble blue I have a daughter who is 7 years old and she said I had to give these away to a boy because they were not in pink. Who am I to argue with her she has a good point so here I am hosting my first ever Giveaway.  I am so exited the process in learning how to host a giveaway was very easy and fun to learn.

The army Tank clogs look just like army tanks (super cool ) is what I think. Bella had her poneys ride in them and had a blast. We got our own pair to try out and test.

The army clogs come in sizes 5-9 M Toddler and are made for indoors or outdoors, they are great for taking the kids to the park because you can just shake them off if the kids get sand in the shoes. The army tank clogs are waterproof so the kids can even wear them to go swimming in the ocean or if you live in Michigan swim in the lake. The shoes would be great to wear in a pool for kids with sensory issues.

The army tank clogs are also great for military families!

I received a complimentary product in exchange for an honest review.  I thought Bella would rock out these bad boy shoes but she just thought they would be perfect for her toys. After all I did order the wrong size silly mommy on my part and I am loving customer service because the company replied right away when I emailed them and asked if it was ok for me to do a review instead of us keeping them. They company was very happy to offer to ship out a pair of shoes to a winner.

Just a memo to me in the future when it comes to shoe sizes.
Size 22 is European size

Size 5 is US size (Toddler)

ha see just a tad small for a 7 year girl old who wears a shoe that’s size  2.


On Amazon listing page there is a size chart from infant through big kid sizes. so you don’t make the same mistake I did.

A winner will have an opportunity to choose 1 pair from blue/gray or brown/green color and sizes 5,6,7,8,9,(Toddler size ), see length of a shoe inside the SIZE CHART


Enter below and Good Luck!



Disclosure: The above item was received in order to facilitate review. I have not been compensated for this post. mommiesquietplace blog will always provide honest opinions, beliefs or experiences on products reviewed. I will only recommend products or services that I feel are of benefit to my readers. mommiesquietplace is not responsible for prize fulfillment; sponsor will be responsible for prize fulfillment.

This event is in no way associated with, sponsored, administered, or endorsed by Facebook, Twitter, Google, Pinterest or any other social media network.

If you have any questions, please contact me Amanda at 

The disclosure is done in accordance with the Federal Trade Commission 10 CFR, Part 255 Guides Concerning the use of Endorsements and Testimonials in Advertising.

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Bella’s speech sessions are over until June.

It was our last session with Bella amazing speech therapist. We applied to start the summer program. Let’s hope we get in because we were able to hear her speak orally instead of nasally. She sounds beautiful when she makes her Sh and S sounds now. She just has to try and focus and she does well. There’s hope that Bella may not need surgery after many semesters of speech therapy. I am so stinking proud of this kid. Bella spoke and she didn’t get air on the mirror when we were practicing her S and Sh sounds and So words and she did so amazing. I have one smart daughter. But man she wouldn’t shut up after the speech session lol careful what you wish for folks. heed my warnings lol

update: Easter Egg Hunt-Spring break-upcoming appointments.

Hello everyone


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You would have been so proud of Bella.
She let all of the younger kids get the eggs at the Easter Hunt. Bella only ended up with 3 eggs and they had laffy taffy and kit kat and she said it felt awful.

I had to encourage her that she did a good selfless thing. Bella has so much empathy and companion I hope to keep that spirit about her alive for ever. Bella is so full of life and just good positive energy she truly cares about other people.
I reminded her that her brothers and sister would help her find eggs even when they were right under her nose. Bella said they were all out in the open field but every time I went near one I didn’t get to it in time. Bella let the other younger kids get the eggs. After we talked and I reassured her. Bella and I went to the party store and got her a chocolate bar and bug juice that makes her world happy. Anything with the word chocolate just lights up her eyes. I don’t have any clue where she get’s that from ? not at all. (like mother like daughter) I suppose.

I told Bella that Sunday she will have a chance to open her Easter basket. This year she wasn’t so sure that the Easter bunny exist. So we explained it all to her and she still woke up in the morning saying you were wrong the Easter bunny was here mom. The Easter bunny gave you and daddy a basket while I was sleeping. Bella got a chocolate Easter bunny, a coloring book and some body washy stuff and necklaces. Bella has crowns in her teeth so she can’t have too many things with sugar. It requires her to brush her teeth right after and she’s ok as long as it’s a little chocolate at a time. Bella sure has a sweet tooth.

Bella also didn’t’ win the bike they were giving away. Bella said she wants a bike for her bday it’s on April 27.

I am still on a hunt for a special needs bike for her legs. She has a mild form of cerebral palsy and behind her legs lock up from time to time. she wears leg braces when she’s at home she’s not suppose to wear them at all outside or at school. Just a few hours a day to stretch out the legs so I feel that those therapeutic bikes (yes the super expensive ones would benefit her. I have yet to find one we could afford.
The past two days have been great for Bella and her behavior she listen and only had a few moments of her NO No Nos. I think being at home constantly and with eyes on her all the time has helped. Bella get’s lost in a shuffle of kids at school because she mainstream with a IEP and in her class this year is 30 something kids. Having a break form one of the kids who is mean to her and other kids helped. There was another mother at the Easter Egg hunt and she said the same kid Bella has been getting into trouble for speaking up to this kid her son also get’s into trouble for speaking up to this kid who is saying things like your stupid, you can’t write nice. I was put into impression from her teacher that maybe because they were around each other that Bella’s had enough of this one girl. That isn’t the case I found out that this girl is just having some issues and taking it out on Bella and Bella is saying enough and standing up for herself. Kids can be so mean sometimes and I am glad to find out my daughter isn’t being the mean one and that both the boys mom and I will bring this up with the teacher.

I also think her daddy being home today for Easter helped too. See my husband has one of those jobs where hours go up and hours go down. Gotta love retail not. Hubby has been looking for full time work but it’s a dog eat dog in the game of employment and it’s not what you know it’s who you know.

This month is crazy tight financially and then we have Bella’s Birthday and two other kids birthdays all in one month things get a bit stressful. Bella Birthday is April 27 then her sister is April 15 and her brother is April 23 the other brother is in June.
I have been trying to figure out what to do for Bella’s birthday and if the weather is nice we are going to have a few friends getting together at the park and have some cake and ice cream.

Spring break has been pretty good with a few bumpy parts so we are just resting and relaxing for the most part and vegging out.
We have some things at the library we will be attending to get her into reading she hates reading out loud because she’s self conscious of her voice. Bella has vpi which in simple terms means air goes up her nose because she has a few weak spots in the roof of her mouth. We do speech every Monday at 5. This Monday we plan to grocery shop go to the park and then speech therapy. Tuesday Bella is meeting up with a friend of ours and were going to play with Legos at the library Bella loves legos it’s great fine motor skill building. Then on Tuesday Bella’s Grandpa will show up. Adam is driving down to Detroit to pick him up at the air port grandma and grandpa (Adam’s parents live in fl) So does everyone elses grandparents right ?
Grandpa is coming to deal with some things he has to take care of and he’s going to stay with us for a bit. Bella has no clue. Bella is going to be so excited. I really am glad it’s spring break.

I took a lazy day and rested up in bed for most of the day. I had some pain flair ups and started a new pain med for the gasteroparies flair ups. I see the pain specialist on the 13 and on the 20th I see my regular doctor who I haven’t seen in a year.

We have a trip April 10th. I have transportation all set and ready to go and this appointment has been ready for a year. Bella ear infections were bad this winter. Hopefully the doctor will see that it’s ear tube time.

I also have a few giveaways I am working on learning how to do that. To reward my readers for being so dang loyal. Even with all of my changes, from blogger, to wordpress to hosting you all have stood by me and this is my small way of thanking you guys. Stay toon because I still have a few things work out.

I also helping to plan 22q at the Zoo in May. I am so excited.

So there you have it. Our agenda for the month of April.

What are your plans for April ? anything exciting ?

check back soon for the giveaway.


I’m learning how to do a giveaway-stay tune. yay!

I’m learning how to do a giveaway-stay tune.
I am so excited I am going to do my very first give away ever. (Aahh)

Of course everything I do on this blog I have learned either on my own (kinda)

I have been watching a lot of how to YouTube videos,learning things from pinterest and Google.

I mean what did we ever do with out this stuff?

If you do Giveaways on your blog I would love to hear your experiences on how the learning process went and how much success you have had with having Giveaways on your blogs?

hint, hint: I am working on a Giveaway for cute kids clogs. They are really cute.

Day 1 of spring break

Today was Bella’s official first day of Spring break.

Wednesday night she was a perfect sweet angel. Then today happen. Thursday April 2 she wakes up at 6:30 do you think I can get the child out of bed at that hour during the week when she has school no… She has to have netflix and xbox bright and early. She sneaks out her room as I was planning on sleeping in and she discovers she no long has any rules to follow for the day if they are mommy’s rules. Bella found a blanket, a box of cereal grab her doll house and all her poneys yes all of them were all over my living room. That’s not too bad she’s watching nextflix that’s also not too bad, wait for it… She’s sitting in the living room with our her good-nights on or her underwear or her pjs eating right out of the box of cereal. My mommy radar knew she was being naughty but I didn’t know or expect she would define me when I told her to get her pants on. Really we need underpants Bella yes even in our homes. You need to wash your hands because I can only come up with so many reason’s why she was in the living room naked at that ungodly hour on Spring Break I know the kid got the message from me that we were going to sleep in and have a lazy day but that is not what I had in my mind. Things the child does to get my attention and to push my buttons. On a plus she’s doing pretty well at staying dry at night. (grumbles finding a positive).

Bella pick up your toys I asked. Her feisty stubborn inner spunk comes out and shouts NO. NO No.
My mommy mode kicks in and I think oh no she didn’t!

So I get hubby up and he’s grumpy because I woke him up because I was frustrated and had raised my voice. To get over the kid saying NO NO No to me. Explaining why we don’t sit in the living room with out underpants near the window… Oh she’s fearless and she’s fighting for independence she’s 7 after all and being the Bella she is our typical stand off begins and I get suckered into arguing with a 7 year old.
Yep I call them a stand off like a Mexican stampede standoff. Bella was just staring me down and glaring at me and smirking doing the stomp and smirk.
Really child. I noticed the amount of stress I am in the more my pain levels increase so I started to think.. was time for her daddy to step in.

I went back to sleep and I put my self in a do over mode. That’s where you put yourself in time out and go to bed and try again later. There was no way I was going to start my day like that.

My husband talked with her made her wash her hands and shower and explained to her why we don’t do that in the living room and what choices she was making was not taking care of herself.

Then lunch time rolls around and I go let her know in a bit it will be lunch time and as I step into her room I am the lucky mommy that finds this stuff, grumbles.

While she’s playing with the window open it’s pretty nice today so I didn’t think nothing of it until wait for it, I found one of her my little poneys hanging from the curtain blinds with it’s neck tied up in the strings the strings that were wraped up in safty hooks but her brother had to open the window when he was in there spraying his man stuff on him. I guess I have to not trust Bella to behave like a 7 year old this week and she’s regressed into preschool mode because she forgets pay attention to what her body is doing. This is typical Adhd symptom for her. We are adjusting meds and oh I can totally see why her doctor asked me to let him know if I feel there are any changes that need to be made. You bet I will be calling the doctor tomorrow. What on earth went though her mind that let her think these two things were ok to pull off.

My only reprieve today was going to a board meeting for a non profit my husband and I sit on the board and we sat in the internal today. I enjoyed my time because it was where I didn’t have to focus on what Bella was doing because she hung out with her Brother she got her netflix time in. It was a hour long. Hubby and I had gotten a chance to get together in peace and talk with out kids interrupting us. The big brother who’s 20 help with making sure Bella was fed and looked after.

Then of course it was bed time when we got home around 8:00pm and as it’s her usual bed time Bella even threw her typical tantrum of not wanting to go to bed because she was not tied. Oh yes you are kid, I said so that’s why it’s bed time. You have been up since 6:30 am. Bella refused her meds we had to use the timer and she didn’t like that timer at all and took her meds. Timmer became the bad guy. 5 minutes she took her meds and hugs and off to bed. meds are because of leg pains do to her cebreal palsy. Every since we have had her on the med for the mussle relaxer she’s been doing well when she’s sleeping at night. Bella has even started to get up every night and go to the bathroom.

Tomorrow will be a much different story we have plans for tomorrow.
Because a day of resting and just chilling with her leg braces on is not on her list of things she wants to do.

We set some ground rules for Bella and tomorrow her father works until 8pm. Then it’s just her and I and I have to have things plans for us to do together because god forbid that child ever get’s bored.

If by the end of spring break is over and I have all my hair missing or I have taken up drinking you will understand why.


TerryTreetop saves the dolphin. Ebook review

Disclosure: I got this Ebook for free to review from Tomoson and Ebooks.

Ebook review on Terry Treetop Save The Dolphin
Terry treetop is a new favorite children’s series. Bella’s she really likes dolphins just as much as I do. So when I had the chance to review a story that had dolphins in it I was excited. As you know Bella has some special needs and is behind by a year developmentally. Bella will be 8 years old on April 27 this year but you know she really enjoyed talking about the things Terry Treetop was doing. She was able to sound out the words and read on the tablet. I think because Bella loves to play with electronics example my cellphone and tablet she is more interested in reading the words on the tablet sometimes then she is about reading books that are hard cover. she can touch the screen save her spot and go back to it at a later date.  Bella was excited that I got another ebook for her to read. Children with special needs like books with simple sentences and are bright and colorful so they can talk about what’s happening in the pictures. The illustrator did an amazing job so did the writer they make a great team.

Just at first glaces I knew I too would love this book. I know what you are going to tell me. Don’t judge a book by it’s cover but I couldn’t help it. This book cover was so cute.

terry tree top
Terry Treetop loves to climb up on trees. That is how he got the name Treetop. Terry Treetop is a series for children around Bella’s age she is 7 and just starting to get the hang of reading. If you have a child who is starting to learn how to read Terry Treetop is very good to add to the eBook collection. We have a Hp slate 7 tablet that we read with every night so new children’s eBooks are always appreciated.
Terry happens to spot a group of dolphins playing out in the sea. One of the dolphins ends up getting into trouble and needs help returning to its mom.
Terry Treetop is brave and helps save the baby dolphin so that the dolphin is safe returned with his mommy. We paused and reflected on how many times my Bella had to be a big brave girl and I was so thrilled that she could relate to Terry Treetop I just hope Bella don’t start climbing tree’s any time soon trying to act like Terry Treetop. I can appreciate this character over some of the unnamed characters that are on Tv and in some other books.
I loved the story. I think this story is very sweet way of explaining to children how we can help others in need. I think the story shows how to be compassionate and it teaches children about bravery.
I collect dolphins so this book was a huge hit for me. Bella really enjoyed the photos and they got her talking about what was going on in the photos.

Over all Bella gave this book 5 out of 5 stars and I give this book a bonus star for being able to read it on our tablet.

Check out the book and see for yourself why Bella and I enjoyed it.

You can find the books on Amazon.

Slowing down for Spring Break.

10885070_10154988418720375_1681464373639188619_nBy Amanda Ripsam

Bella’s starts spring break officially as of  tonight. 

The plan is cleaning and organizing just a bit. To finally begin getting rid of the germs that caused Bella to get sick and had me sick.

I get to start tackling appointments that we had to put off so Bella didn’t miss out on school as much as she has all ready.

I am also planning on having some fun with friends Bella’s and mine. Spending family time also. On the list of our excitement is a Easter Egg hunt, some trips and play dates with friends we don’t get to see much. Oh and my favorite No home work to do with Bella. If you have a child who has sensory processing disorder, Ceberal palsy a mild form and 22q11.2 deletion syndrome along with ADHD both physical and emotional in the way it effects Bella you would get what I am talking about. It’s hard to describe how it effects her I am still working on the wording for that but it’s a struggle to say the least to get her interested in things she dose not want to do because she can not focus. We are dealing with a med change she was on Tennex and now on to Intiuv. We have a few doctors appointments a Ent appointment at the U of M is coming up. We have to set up a appointment for a video eeg and then we have speech which is coming to a end and Bella will have a short break here in a few weeks. Bella has made leaps and bounds in speech therapy.  Bella is diagnosed with a few speech issues the major one being Vpi hypersnality and soft palate. We discovered how the cebreal palsy could effect Bella speech and will continue along this journey of doing all we can to not have surgery as it does not look like she will need surgery because regular routine speech has been helping so much. She has had some great Oral speech and did very well this week with not getting her air up her nose. We have some stickers to fill out on a chart to get her to a prize next time she goes to speech therapy which is on Mondays.

We got caught up from when she was sick she had a seizure in class and we have some follow up visits with doctors to address seizures in the classroom. They are not the kind of seizures that she will fall to the floor they are the staring off spell and the falling a sleep spells she had a ear infection that lead to a high temp twice this winter which is why we stick with a Ent and neurologist. The speech she is doing so well. Bella is also feeling like her legs are not as tight since we have her leg braces we currently are wanting to look into a special bike for her.

As far as making friends at school she has some that are boys and she has one girl that she’s friends with in class and another friend but the kids are saying she’s not smart like they are and they taunt her knowing she’s reactionary and there is very little that is happen where the help for Bella can be there. I ask every day who’s she’s played with at recess and at lunch I just wish I was there at school with her to hold her hand and show her the ropes but she has to learn and discover it all on her her and it’s so sad and frustrating to know she does not do well with rejection. There is one girl who she has been mean to but she says that is because the kid has been telling her writing is sloppy and Bella can’t seem to do anything right by this kid and Bella’s just about had it with her. We had a meeting with teachers and I think we have worked out a plan to separate the two for a while and see what happens. I hope Bella can focus on the other amazing girls in the class room who do want to play with her. I found out that she is playing with a kid in kindergarten at recess because she rides the bus with Bella and does not have any friends at all. I had to take a moment and think Bella has one friend and friends who are boys and I had to celebrate that accomplishment and focus on the positive.

I am still getting to learn about cebereal palsy as much as I know about living with 22q11.2 deletion from having it myself, my father having it and my siblings having it I knew what to watch out for when it comes to Bella I had it figured out. Now the cebreal palsy is like a new learning challenge with just as frustrating symptoms as 22q112. has and just as emotionally draining as it was when I first got diagnosed and know one knew what to tell me as a adult what to look out for when it came to 22q11.2 deletion. I did meet a very sweet girl on instagram who I will keep nameless for now but she is bright and so compassionate and has reminded me why I help others by her just simply answering the type of questions I had that parents come to me asking about on 22q11.2 deletion.

Sometimes I feel like being 32 and having all this on my plate on top of being married with a family and my own health issues how can I be there for others when sometimes I have to set boundaries and limit what I can and can’t do to help others in order to keep myself a float in this pool I call life.  I have to admit I have retreated into myself and been focused on self care and hating every step of the way. I hate admitting how overwhelmed I am. I can’t seem to stay focused and this spring break is what I needed. I needed to slow down because I have been on autopilot for so long that I have felt like one thing after the next I forgotten to use my coping skills that all the years of therapy has thought me. I felt like I was close to the edge of loosing it feeling my happy self slowly slipping into a self pitty party for one. My husband trying to be supportive only ended up being barked at because how could he understand he doesn’t have a deleted chromozone issue.  I began judging my own judging and slowing down and having spring break is exactly what I think the doctor ordered. I don’t have pressure to get Bella out the door on time with her tantrums and outbursts because she didn’t want to shower or get up frankly who can blame her. Bella has long days at school and coming home only to do the same routines over and over again. I need to also take time to find what is working in my routine and what isn’t working.

On a much different note because hey I am the one typing this post I have a few giveaways this month on my blog. I have had webhosting and my domain for a while. I even have a new look yes again. Sorry guys but sometimes things work and sometimes they don’t work and fine tuning and figuring out how things work best is a way of coping with the craziness that is my life.

Oh what I wouldn’t give for a vacation to escape alone with the hubby for a while and just enjoy one another. Having kids is a ton of work and sometimes loosing sight of goals and end game can reak havoc on a marriage. We are doing so well and amazing in our marriage despite all that’s been happening even with hubby looking for full time work we are making ends meet but my fear because I can’t work is how long can we make ends met and I have felt so much pressure from the kids all having birthdays in April to Easter and I forget that we were not even where we are now two years ago we were living in a camper in the pastors back yard. Now look we have our own place and are making ends meet. Retraining my thoughts that seems to be over looked when I am on autopilot. Taking the time to slow down is why I am so excited for spring break.

I know I rambled but I haven’t in a long time and I felt it was needed to be said instead of just saved to one of my many saved drafts.

I thank everyone who has supported us and my many friends.

Thank you for reading and sending emails and messages and helping me stay the path and be focused on my end game.


How to make Tinkerbell Curtains

Tinkerbell curtians how to make them.

By Amanda Ripsam How to sew curtains

I found this fabric at WallMart it’s a soft purple with Tinkerbell on it. In case you were wondering yes my 7 year old loves Tinkerbell.
See these curtain were not store bought I made them with my hands and a lot of patience. I hate sewing but love to do creative things like this.
I bought a yard of fabric which was on sale and I got it super cheap for around 4 dollars
I cut the fabric in half and sewed the sides with a back stitch as showed in the first photo so you can’t see the thread on the outside. I also found a curtain rod for about 5 dollars went to the dollar store and picked up some shower curtain hooks I like the clipped on hooks and the look of gold so that’s what I used you can use any fabric you don’t need the Tinkerbell like mine and you can use any curtain rod they sell at Wall-mart/Target.
I loved the fact it took me three days to sew each one mind you it was in the summer without Bella being at school and I was very busy in the summer. I probably could be done in two days but you have to sit and really focus and just keep at sewing each stitch by hand if you’re lucky and you have a machine you can use a sewing matching as well.
Bella loves the Tinkerbell curtains. My friends have wanted to see what I was talking about and what I had been working on!

I can’t sew a straight line to save my life, this is the trick my mother in-law shown me.
I folded the inside a quarter of a inch then stitched up the sides all over. yes by hand it’s hard to keep a straight line I took my thumb as a guide.I measured for the width of the fold over my thumb and stitched up the middle. It took me hours. I almost gave up. Then I remembered I can do anything for 15 minutes. I stitched it every 15 minutes when I had the spare time while the kid was in bed as it was a surprise for her.
Now if your an adult you can choose any other fabric you like. There are all kinds of hobby stores.

Don’t know if these would sell but I sure had fun making them.

Have you ever done a do it yourself project ? if so how did it turn out? tinkerbell2

Welcome to my quiet place

Welcome to my quiet place. If you happen to see my hubby or the kids could you hide me for a bit longer please…

Usually I need my own quiet time because I have so much going on in my life, that I need Me time to unwind and just be alone with my thoughts. Uppercase M on me because this is my blog and my quiet place and I’m inviting you into my bubble please don’t burst it while your here. Spammers are my bubble busters I will hunt you down and find you and pop your bubble. Everyone else is however welcome here. Sure it says mommies quiet place but you don’t have to be a mom to be part of my readers vip club. if your friends with me and you don’t have a child but you have interest in my life story or even just want to read what I write feel free to do so.

Most of the time I will be blogging about the multiple health challenges my daughter and I have. As you may have known we have a rare genetic chromosomal disorder called 22q11.2 deletion syndrome but the name don’t stop there see the community can’t agree to coin the term 22q or Digeorge as it was named after Angelo digeorge but it’s also known as vcfs aka velocardiofacial syndrome it really depends where on the chromosomal arm ban the missing dna marker has made it’s changes do to this no two people with this syndrome will have the same exact full list of symptoms. Some have congentional heart defects some have seizures some have hypolcaluma some have thyroid issues some even have bi polar or anxiety but not everyone has all of these symptoms. There is very limited knowledge on Adults with this rare syndrome do to the fact that a FISH test isn’t widely available or even known to the general public that it’s out there to help diagnose chromosomal disorders. I am 31 years old at the moment and I not only understand it but live it and have a child with it and I’m a sister to someone with it as well as a daughter of someone with it I may not have all the answers and I often wonder what is going to happen when I hit menopause I have gasteroperies, GERD, multiple gallstones, and a massive hitial hernai I had a mallory wiess tear but that healed up. I have ears that have a hole in the ear drum. The million dollar question no one can tell me is are my health issues digeorge related or just health issues that a normal person would have.

My daughter has health issues too but they are different. My siblings and father have health issues as well but are different too. I will be blogging about that stuff as well.

We all have a certain number of chromosomal tell our body what to do that’s the function example would be x and y chromosomes tell us if we are to be male or females. 22q chromozone has genetic markers that tell certain area’s of our body how to work but with out the arm ban there to connect the line of communication from chromozone to body function some functions are not fully operating don’t worry my brain works. I can tie my own shoes and wipe my own butt. oh and I am married have a child and live independently. I’m perfectly normal appearance on the outsize and I am a stay at home mom . I used to back in a different time of my life had three jobs at once I have had jobs in a hair salon and photo lab and you know what if your wondering your child could manage that they probably could if you backed off and let them. Being over protective isn’t helping them it’s only shielding I am grateful I didn’t know I had digeorge 22q until I was 24 because I probably would have been told that I needed people to help wipe my butt or tie my shoes.

yep I share my candied thoughts with you my readers. I enjoy meeting new people and interacting so never be shy about leaving me a comment and wondering if I’ll return the comment or not. I love comments and feed back. It helps me grow and be a better blogger.

If you haven’t been to my blogger page before here it is yep I do have my domain on my blogger blog but I am transiting over from being a personal journal to starting to run a business blog.

There are some changes going on with mommiesquietplace guess what I love changes I embrace life and it’s many challenges and life each day to the best of each hour that I can. I will also share what symptoms Bella and I have. I will share about my three siblings who have 22q as well and about the one sibling I lost my father also has 22q and occasionally I’ll bring that up too. Yes I’m unique to have 5 of us with it in our family. Some family’s get tested and no one else has it but the child. Everyone should be tested. yes, it will change your life and yes may even bring on challenges that can be scary but what if you didn’t get tested something fatal could happen and you wouldn’t know until it was too late. I lost my brother at age 6. Wouldn’t you want to be there for your kids wedding day, graduations and their kids graduations. I know I want to raise my daughter and be around for as long as I can. Getting tested and treatment of symptoms so I can live longer has been the best choice I ever made for my daughter before she was born. I knew she could have had this too. When I found out I was pregnant I was 24. I found out at 21 about my 22q and my world got turned upside down. Not saying your world would change like mind did but some people say that was a selfish move and others are inspired by the story. I say to each their own and my life is my own personal choices I personally believe that this blog will help inspire others and also help inspire me to grow together with my readers. I hope you stick around and become a regular follower and yes if you follow me I usually will follow back.

I look forward to seeing you around soon.

My thoughts on blogging and sharing my thoughts online.

My thoughts on blogging and sharing my thoughts online.
youtube art

I think the fear of putting myself out there isn’t there becasue I never cared about or began to wonder if others laughed at me. I simply have a I don’t care what others have to say that would be addressed towards me in a negative way that is one of the boundaries I learned to put in place a long time ago. People question and thought I was wasting my time because I choose not to blog for money but selflessly blog to show others how to have compassion.
For the people who are living with rare genetic disorders in general often feel forgotten or ignored in support groups because how can they even fathom what life is like for a parent. How can they know as much as a parent who’s’ read a ton of books or a doctor who has done research on our disorders?
Let me tell you I play the role of both parent and person living with it and both roles are a never-ending task and battle for compassion and understanding of how life affects us.
Both kids and adults living with this disorder are highly stigmatized by the fear people and parents and caregivers have and miss conceptions of what limits we face.
I use my blog to voice my truth that is open and very public because if I have at least helped one person then I did some good for the day. I often run into parents asking questions who wonder what their child can, and cannot do as an adult!
Offering hope inspiring and teaching compassion for people who are care giving for another who has a rare genetic disorder and helping them know what if feels like is amazing when you see the parent connect the dots and show loving kindness after that patience they didn’t think existed before they knew what their child was feeling.
That connection alone I feel justified the cost of webhosting domain and besides I have fun meeting new people all the time either online or in person than I ever would have if I never had the blog. I have also gotten to test out some great products that I would never have tried because I did not know about until my blog existed. I can share my thoughts, photography, poetry, and my personal story all in one place on my blog. I also have more control over who gets photos’ of my daughter and get’s to see glimps of our life because I know the people who support my blog also support us.
How awesome is that? Learning who is there for you, vs wondering and wasting time on those who just want to gossip about your life to others.
I put a lot of time and effort into my blog and the work is starting to pay off. I also get to learn so much and challenge myself to step outside my comfort zone.
I want to thank everyone who has taken time to support my blog and my efforts to help me share with others how having a rough start can turn into something amazing.

life update posting from my cellphone

Hello everybody!

I hope you have not been to worried about us we have been doing ok.

Bella had a ear infection that lead to a seizure from the fever she had in class. I can not beging to deacribe the fear of those phone calls from her school for me to pick her up knowing I can not drive and hubbys at work. I am very glad that I live within blocks from the school. All the way walking to school I kept wondering how my babys girls been.

Ok shes seven but still my baby.

Bella has so many multiple health issues its difficult for me to put into simple easy to understand terms that help my friends and family understand whats going on. I so often interact with doctors that when explaining to teachers or family members, I forget how to find my words to make the words I know simpler to understand. That is why I have a advocate to come to IEP and conferences.

A few weeks back Bella had a temp of 101 I picked her up from school and she rested up over the weekend and all seemed fine minus her typical runny nose and allergies flairing up. I had to pick Bella up last week from school because she had a spell in class a few falling a sleep spells that teachers can’t tell me if shes fallen asleep or a seizure because they only understand the typical falling on the floor type of seizures.I am greatful teachers leave notes for me to help document so I can get a decent record of what happend. I know during her spells shes not able to say shes had one until after the fact.Bella is smart enough to know the difference she fells it even more so then I give her credit for this last spell left her sore all over add a temp to that and a ear infection and you have one sore tired little girl that has been super clingy to both Adam and I.

I just hope teachers understand her when she says she had a staring spell or falling asleep spells or if shes just saying shes had one to get out of doing work she dont want to do. The doctor wants to get a camera on Bella or even get the teachers to record when a spell happens during school and I was all for it. We even have to set up a video EEG. Bella has been lucky so far but I wonder how many spells shes had that we may have missed do to lack of general knowledge about her condition and how it personally effects Bella. Since the school has her more hours out of the day then I do the doucmentation was needed to help determine if shes on the right meds and any other issues that come up while Bella had one more spell this time because she had a inner middle ear infection we need to stay on top of them and had to get iron and calcium levels checked hypocalciuma is strong in our family of the members who do have 22q my father three out of four siblings and myself and now Bella all have it and the common thing with us all is low iron and low calcium.
The hypocalciuma symptoms flair up and seizure symptoms seems to gotten worst from the sinus infection and she was on two different types of antibotics. Bella also becomes much more nasality in her speech. We have also statred her intenstice speech theraphy but she missed past two sessions do to being sick. Now shes finally starting to get better next Monday we start back up again. Sometimes I wish we could just take a medical leave from school durning the winter months. Bella has been catching up on home work lot of home work she did all of it and we handed it all in this week. Bella loves to show me what she knows and don’t know its sad to hear that kids are saying shes not smart and she cant write nice like them she has some social issues and makes friends but keeping them seems to be difficult because she can not keep up with the other kids do to being sick missing school and just being in a health rut during the winter months with out mich complaining she struggles with it all and is so smily about it all with out really realizing much of it other then one of the girld seems to be the ring leader Bella has started to be mean in turn and I had to tell her how to not be so wrapped up in what other kids think of her and there is a huge list of kids in her class who do like her vs a few who dont she does not handle rejection well. The things Bella is able to do with assistance vs what she can do with out assistance is clearly do to her ADHD both emotional and physical ADHD and sensory processing understanding those are medical symptoms as well as mental ones would help those working with Bella. The ears have been our concern this winter and I think I will have to push the ENT to get tubes back in her ears she would not be as sick so often and I am looking dorward to having a productive ENT visit. ENT is short for ear nose and throat doctor who actually has a much longer name to pronounce because he is a specialist in OTOLARYGONLOGY I didnt yell that was me spelling it out ha I hope I did spell that word right. My ears seem to have been passed on to my daughter along with the genetic deletion 22q ears are not fun at all. The appoitment we have next is to see the ENT in Ann Arbor Michigan at U of M on April 10 I had it set for spring break so Bella didnt miss much more of school. I have to say I am looking forward to spring break because Bella is feeling better and we get to do some fun things. There is a Easter egg hunt in town Bella has a list of friends to visit and she gets to spend time with mommy and daddy. In the month of April we also have a few birthdays. First my step daughter then my step son then our daughter Bella and in June it’s my oldest step sons birthday. We also have Easter so I am looking forwar to the celebrations but not the price tag to go with it all. I have been doing a lot of product reviews because it helps with some of the cost for bdays and Easter suff. This month on the blog you will start seeing a ton of product reviews. I even am considering a few give aways. Thats what I have been busy doing this month. On top of keeping up with our routine attending board meetings taking notes for the pastor and going to church. I had also renewed my domain got webhosting and we are celebrating three years of hubby and I having our own place so unpacking still… I know… and making my apartment more homey feeling. Tomorrow the city is going to inspect our apartment so this month matience guys fixed our leaky roof and our bathroom cieling fan and we got brand new smoke dextors these smoke dextors last for ten years and they all go off at once especially when I cook eggs ha sorry neighbours. Speaking of neighbours two moved out and I have coffee every day with one of my neighbours. Then some how I find time to do some behind the scenes blogging.

Life is all about balance, so where is my balance button?

How has your month been so far? What exciting plans do you have for spring break with you and your kids and spouse? Our snow is almost finally all melted and our short cut to the bus stop is clear that made Bella very excited and we saw some birds and deer come right up to our apartment. I will post some photos soon. Photography is one of my favorite hobby what is yours ?

Leave a comment below I love hearing from people who read my blog.

Chow for now


#22q at the zoo 2015 in Michigan is coming up

22q at the zoo 2015 in Michigan is coming up.

22q at the zoo

22q at the zoo

I have been asked to help set up a get together in Grand Rapids Save the date everyone. May 17 more into here. I was asked to help set something up and I am glad to do so. Considering I have helped with a rare genetic support group in Kalamazoo Mi I am honor to assist with a 22q11,2 deletion support group one that can meet local in Grand Rapids Mi who have children attending Helen Devos hospital and local doctors. I know a few good ones. I attended the 22q at the zoo last year at Binder Park we just saw the tail end of it all got to meet two family’s last year. I am excited to start working on a support group for family’s in the Grand Rapids Michigan area and surrounding areas of course. I live in Otsego. It’s between Grand Rapids and Mi. I am willing to meet up and have meet and to help. I have a father and three siblings who have 22q I also am raising my daughter who has 22q as well. for more details about my personal life expertize on what life is like with 22q check out my blog. That’s what this fan page is about after all a look at our medical journey and life with 22q11.2 deletion syndrome. Details still to come.

#Tomoson #Reivew #Nutraplex Megaberry Bar and Pineapplecoconut Bar Review.

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Disclosure- I received the mentioned product courtesy of the sponsor for the purpose of this review. All opinions are 100%, based on my experience with the product, and have not been influenced by promotional items.
#Tomoson #Reivew #Nutraplex Megaberry Bar and Pineapplecoconut Bar Review.   By Amanda Ripsam


I am a member of Tomoson and I received two Nutraplex Bars in the mail for free in exchange for my honest review. I am so excited to share with you some chewy snack bars I think you will enjoy. I know I did.

One is a Nutraplex pineapple coconut Bar and the second is Nutraplex Magaberry Bar.


The pineapple coconut bar was a chewy bar that tasted pretty good to me. I didn’t really get a coconut taste but I did get a bit of the pine apple taste.

I’m just putting in a picture of the two bars together and I attached the front and back of the packages so you can see for yourself.

I liked the texture it was like a typical nutritional power bar and I liked that because I often get some power bars that have almost no flavor the bars I got from Nurtaplex tasted pretty good and they were more like chewy peanut butter bars.

This is a short review because I got two to test and try out and yes I liked them and thought it tasted like chewy peanut butter bars. The flavors were very mild so there was not a over powering amount of any one flavor.


what bars look like

Nutraplex Magaberry and pineapplecoconut Bar



Ingredient list of pineapple coconut nurtaplex bar

All Times Finest #Spiral Slicer Exclusive #Giftbox #Review. #Tomoson

<a href=”” rel=”nofollow”><img style=”display: none” src=”” /></a>Disclosure- I received the mentioned product courtesy
of the sponsor for the purpose of this review. All opinions are genuine, based on my experience with the product, and
have not been influenced by promotional

Hello Everyone!

Review by Amanda Ripsam

I am excited to share with my readers a wonderful gift idea.

I was asked to test and review this Spiral Slicer and to give my honest opinion of the results.

The Spiral Slicer is really a great gift for a person who loves to cook I really do enjoy cooking. 

The spiral slicer comes in a beautiful gift box included are two brushes to help clean the blades and a booklet to explain how to use the slicer correctly which I will show you guys in the YouTube Video.


I am very happy to discover that they actually enjoy having zucchini as a substitute to spaghetti noodles. I can’t eat tomatoes products so I am enjoying this veggie slicer. My 7 year old get’s picky some times with the same foods all the time so I tell her it’s a spiral carrot and wow just a change in a word can allow me to be a sneaky mommy to get some veggies into my kid. I love carrots my husband bought 11 bags at Meijers when it was buy 10 get one bag free. Please do not tell my husband about those kind of deals, he is all for them and we end up with a lot more carrots then we need. I am glad to have this slicer when it arrived.

I hope you have enjoyed the post and here is the link to my YouTube Video. Don’t forget got subscribe to my blog and YouTube channel.

So what did you think of the veggie slicer? Leave a comment in the comment box I love hearing from you!!

Review by Amanda Ripsam

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Genetic Test came back positive for 22q11.2 deletion now what’s next ?

22q11.2  Syndrome is not detectable by routine genetic testing (called karyotyping.)  Most individuals with 22q11.2are identified either by something called array genomic hybridization (array GH) testing or by multiplex ligation-dependent probe amplification (MLPA) testing for 22q11.2 deletion syndrome. Both of these tests are performed with blood work but can be diagnosed in pregnancy using cells from the placenta or the amniotic fluid. – See more at:
Bella and I were diagnosed by a FISH test. What is a Fish test ?
Basically a doctor sends blood work down to a blood lab for a sample of while your blood. After the lab received the blood work the friendly lab people take the blood and shine it under a light and if the spots light up bingo we have a winner for 22q deletion.  The test looks at dna markers and locations of where the deletion occurs. It’s amazing what doctors science can do when they have knowledge.
Now the frustration was finding a doctor who knew what 22q deletion syndrome was. I met this wonderful amazing lady who was Bellas doctor at Alger Ped in Grand Rapids. She’s a stay at home mom now and we have another doctor in kalamazoo and we are so greatful. I found a youngish doctor who was not stuck in her ways at all. Infact she wanted to learn all she could about 22q and help Bella.  She called infectious disease and everyone she could think of she was simply amazing.
She refered us to specialist like a Audiologist,  Endocrinologist and a neurologist.   Do to Bella having hypocalciuma and having eye rolling shakes in her sleep and seizures that are now given a name to them called vego vesso. The act like seizures but are not seizures.    The doctor also sent Bella to have a age bone scan to see if she was having the correct growth because of the low calcium levels, Bella had extras of all of her limbs everything there was normal. Bella also had trouble breastfeeding do to what I found out many years later was a result of her having a weak palate.  Which effects her speech Bella is 80% hypersnale. Bella was discharged by two different heart doctors do to having extra blood pumping in her lower left ventrial which resolved on it’s own.
I had the test in Canada because when I was looking to get tested over 10 years ago the test is very expensive over 5,000 dollars here in the us.  In Canada under Ohip in Ontario I was able to get my test done at no cost.
when Bella was born she had her test covered under medicade and I had about 10 or so medical students all asking me questions along with the Doctor of why I need to have this one test and not the others. See this is the same test they used for my father, and siblings that discovered one of my younger brothers has 22q deletion syndrome.  Sadly we lost one of my siblings when he was 6 years old. His eyes were donated to a little boy who needed eyes.  I am a strong supporter of organ donation.
I remember over 10 years ago when I got first diagnosed and couldn’t find one adult or doctor who knew what to do with adults. Sadly to this day I still have the issue of so many doctors who are specialist in this disorder who don’t know what to do with adults because they have only delt with children.
If you are waiting on a genetic test result please remember no matter the result it does not change who you are as a person or who your children are. It is not your fault. You did nothing wrong.  There is nothing you could have done to prevent this. Some may argue but you knew you had this disorder and you still had a child. Yes that is my own case and people ignore me because of my pro life views are different then theirs are. That’s ok we are all here for a reason because we are uniquely and wonderfully made.
You are still you inside and out. I don’t feel anything changes about your fiber and DNA it has always been there the results are just answers that provide to give a guided path on how to get treatment for the symptoms because there is no cure.
Treat yourself kind and others kind in turn and never ignore someone or feel you need to one up on more knowledge then the next person. Accept what is and be open to others values and beliefs with out shoving your own view points down another person’s throat.
I am writing this because you may be facing the reality of having a child with a genetic disorder and are wondering what to do next and are lost scared and confused and feeling guilty but you are here for a purpose so is the child you have or will have. It does not change anything it simply is a way of knowing for sure instead of always wondering what if.

32 years old with 22q11.2 I have a rare genetic disorder and that’s ok.

#Annies Organics #bloggerreview #momsmeet #review and one year blog anniversary.


1 year blog domain birthday.  *does a happy dance*

Happy 1 year Blog Birthday to me. This blog has had it’s domain up for a year. I just did the renewal and I have webhosting still. Does a happy dance. I have made so many great friends along this journey and this video is a thank you.  It is our first unboxing video from Bella and I we both hope you like it and look forward to doing many more unboxing videos and other fun videos for you guys.


PicMonkey PhotoHappy 1 year birthday to

This blog has been though such a enjoyable journey and I have learned so much. I am glad to say that I still have webhosting and I just renewed my domain


amandapic  Thank you so much if you liked this blog over the year please subscribe so you never will miss a post.


What challenges do family’s with Rare Disease/undiagnosed or genetic disorders face?

What challenges do family’s face living with a rare disease and why should we care ?


Capital building in Lansing Michigan on rare disease proclamation day. 22q11.2 deletion face

This is a personal blog post, and it’s a detailed post of my experience for rare disease day.

Please grab a cup of coffee or tea and get comfy.

I am going to share what I took away from a trip to the Capital building in Lansing Michigan on rare disease proclamation  day.

As a person living and raising a child with a rare genetic disorder called 22q11.2 deletion syndrome the reason why this day is very important is because we are able to have validation. Validation of not only our rare disorder but knowing about other types of rare disease that are out there that don’t even have a name also exist and we are not alone.  I can say I know what I have but there are others who can’t yet know there is something different about them or their child.  The challenges others face make the challenges we face with how mild or deletion affects us is heartbreaking and makes me feel so blessed that I have 22q11.2 deletion syndrome.  I am not taking away the symptoms that need treatment with our disorder or the fact that we are dealing with a lot of our own medical challenges but putting into the entire picture of health into perspective by seeing how much we could have on top of what we don’t have is blessing all in its own.

Having a group of people with different disorders both Adults and children  there at the capital who are living with this disorder and rallying to be a voice for each other to support one another and not compete over who knows more  was refreshing from being in the online support groups. I enjoyed the interpersonal interactions with some of the other family and making connections with some very proactive advocates. There was no puffing each-other up or down playing any person illness vs the others like we run into online there was no hiding behind a computer screen. It was all out there in the flesh and everyone venerable to not only those who stood up and spoke up but the emotional reactions of everyone who was listening. I love sharing just straight up facts about what rare life was all about.

The people speaking were very brave. I didn’t get up and share my story I missed the sign up deadline and I didn’t get that information about how to do so until I got there. So here I am typing behind my blog and hopes that maybe next year I will get up and share my story.

There are people who choked back tears and I am going to leave names out because I haven’t asked them to share their story’s but I feel it’s the facts that they struggle with that need to be addressed by our congress members. Congress I think it’s  time to step up and help these family’s get the support they need to take care of themselves and their children. I would think if you put yourself in the shoes of the people you would understand why there is a strong need to learn how life with a rare disorder is so very challenging.

What if it was one of your own family members who was facing these challenges what would you do ? Where would you look for resources ? What if you were low-income and on Medicaid with children’s special health care that’s what I face with my own family. The heart breaking story’s I am about to share are people who have been facing challenges of not having much-needed services provided or knowing where to look to get the assistance they need. At the time of diagnoses before diagnoses I can attest that nobody told me what resources were out there I have to become my own expert and know more than the doctors and convince doctors with PHD that I knew more than they did about a disorder they knew nothing about.   You know I am not the only person who had to experience the fear and frustration that knowing more than a doctor and how it would hinder the life of the person living with the disorder not being able to get tested or treatment because of not knowing where to look or who to turn too.  There is a saying that knowledge is power that awareness alone is enough but Knowledge is just the stepping stone because Doctors without knowledge is power to keep us the little people down and suppressed in fear and not able to take a stand against the self-important Phd holders they in fact started at a basic human form just like you and I do and have only read some more books that’s the difference between doctors and us.  Doctors don’t like to admit they do not know no different then we hate admiring we don’t know how to find services we need or where to turn to after we get diagnosed.    It is often frustrating to have to help the doctors understand the importance of how the rare genetic disorders affect our lives.

Children special health care services stop paying for medications and other services once the child turns 21 years old and are cut off if you have multiple health issues try finding and keeping full-time work with the benefits that are needed.   I didn’t know I had 22q11.2 deletion syndrome until I was 21.  I also don’t have health insurance. I can’t work either. That is a huge challenge that is not needed for family’s with a rare genetic disorder when taking care of their health issues is a challenge all on its own. The other frustration family’s with rare genetic disorders face is legislation of capping of co pays because my daughter has a rare disorder the insurance company’s can not provide coverage unless there is a code.

ssi disqualified my child because they didn’t know what 22q11.2 deletion is I had to spend time appealing the process and fighting with them I could have spent that time I used filling out all those medical papers and having more doctors appointments then needed and spent more time with my child.   Do you know the code for 22q11.2 deletion syndrome? no I bet you don’t even if you work in medical billing. So many of the other rare disorders what if what the family’s rare disorder don’t have a name how is treatment provided then?

Groups of disorders are funded by research but what happens after those research study’s are over with ? what happens to all of that private data and information is shared by people if there are so many research study’s out there what stops a cure or treatment from being given to the public even if treating symptoms are all that can come out of these study.

We often know more than professionals doctors nurses teachers and many more so-called professionals with Phds and trying to tell the people with Phds that we know more. How do we get our voices heard? simple we alley up and stand together because we are rare when we are alone but together we are strong is the slogan I took and learned on rare disease day.

Our voices are not very loud at the moment our voices are a quiet whisper among the medical profession but with a blog post here and a story shared there to members of congress we can not be ignored any longer take my blog post for example this isn’t going to go down from the internet and it will have a national audience because I have web hosting and my own domain which I pay for only I can take it down. It’s out there our challenges we face having a rare genetic disorder now that you know what issues we face what are you going to do to help us bond together and fix this.  You can become a donor there are needs and people are able to be matched up easily What every parent and child needs is a huge list beyond the basics of food shelter and clothing living on low-income I have my own personal experience in poverty just trying to make the needs of my own family’s basic needs before providing any extra services we needed such as leg braces for my daughter who not only has cerebral palsy but 22q11.2 deletion as well. Price tag for medical bet is out of control just going to get seen by a doctor is 150 at the er not including medical testing which I have multiple of bills to prove the hardships we face as a family with a rare genetic disorder do doctors need to get paid sure but do doctors who don’t even know what our disorder is at the ER need to get paid 150 just for looking at them  if you don’t have insurance I think not?

What do we do when we do not know what is happening to our bodies? or are even sure what steps to take are to find the services and care we need. Many people don’t know there is charity care at hospitals for people like me who can not afford to pay 150 medical bill and charity care is income based then if we get it we are looked at like we are a charity case. What do we do when we face depression fear anger and guild especially when we have passed on this rare disorder to our own children.

Struggles of what it is like to be a mother of a child with a rare disorder is in many of my own blog post but who wants to read the sad blog post all the time.  All I can do is dust myself off and see what I can do vs focusing on what I can’t do. There is infectious strength when we are gathered together by a large group of number of people who are facing the same struggles of life with a rare disorder. The need for continued funding after those study’s are done for example would be one thing that could take a burden of for many family’s so we don’t feel like we are alone and forgotten. Local and national fund-raising efforts to help keep children alive with knowledge and hope and compassion example on blogs like mine where you can find some type of hope inspiration and compassion that you are not alone are out there but not very viable to congress members where bloggers voices matter.

Let’s touch the subject of military family’s do they really have to endure this crap treatment when they get back home too their family’s? Don’t you think military family’s been though enough defending a country that shows lack of respect for service men and women by members of congress who get to sit in big comfy chairs and tell them how it’s going to be when they have no clue the reality’s of what life really is like military family or not we need more people in office who actually care about the health and wellbeing of the people.

  you don’t imagine having a child or being diagnosed  with rare disorders and not knowing what’s it’s called or where to go for services or treatment can be a huge challenge. Did you know that Medicaid will not always cover out-of-state travel and some times we have to go out-of-state just to find a doctor who knows what our disorders are. Specialist in local areas are lacking and we often wonder if clinical trials are our only hope for treatment at a risk that treatment may or may not work at the risk that after the clinical trial it goes no where and it was a waste of time.

Medical equipment such as Wheel chair cost are not covered by Medicaid if it is it’s only one manual vs a power chair and if you have two children you are totally screwed and are left on your own yet again. The rare diseases do not get approved for ramps or conversions for vans how do you transport children who need these medical supplies and services there for taking more money out of parents pockets from the jobs they have to work 40 hours plus the money does not go on children fun stuff forget trips to Disney land or vacations like the president takes with his family. Finding in home respite care coverage is next to impossible when you have a rare disorder because there is not those right codes that are needed for billing purposes so then what happens? were again alone but together if we continue to share with others how much we go though and struggle as a family.

 Primary care giving causes many health issues of our own health issues and can prevent full care being able to give to children pulling our backs out, health issues of our own if we too have the rare genetic disorder like in my  case the cost of treatment for therapy and medications for care givers is added to that bill because the stress the toll of fighting with insurance company’s and doctors and nurses and teachers can cause.  Fear of being let down and no one around us are able to understand unless they too are experience the same frustrations of all the multiple doctors appointments only ending up doing the jobs for doctors and school teachers because they can not fathom what it is like to live with rare genetic disorder no different then we can fathom what life would be like if we lived without a genetic disorder. So many children die because the lack of knowledge that is out there I sadly lost my brother when he was 6 years old. My father and all three half siblings have this same disorder 22q11.2 deletion syndrome the same disorder that myself and my own daughter have and I am for one am exhausted and fed up with not having my voice heard for funding of research for adults with this disorder and many other rare. Two working parents income on a full-time with benefits are needed but with this job economy many parents are one working parent homes because someone needs to be there 24/7 taking care of a child with multiple health issues that can go arise at any given moment.

What does anyone guide us  when we are diagnosed? Medicaid wavers are useless waste of time because denial after denials are going to happen when there is no code for a rare disorder not listed.

how do we get doctors to comprehend that a mom with out a phd knows more than they do ?

Fundraiser to help kids with heart disease.

My Daughter is working on a fundraiser to help kids with heart disease.
This is her message to you all my reads.

Personal Page link:

“I’m joining millions of others to help save lives with the American Heart Association!

At my school, I’m learning how I can help make a difference by raising lifesaving donations to help kids with heart disease. I’m also learning about my own heart, and how to keep it healthy. And I’m getting active!

I’m excited about raising money for other kids – kids with hearts that don’t exactly work right and to help fund new medicines and treatments to be discovered.

I have a goal to raise $250.”

Please help me make a difference! Thank you! – See more at:

Questions for adults with 22q11.2 deletion syndrome.

Looking get some support from a 22q11.2 deletion syndrome Adult raising a family of her own with a child who also has 22q11.2 ?

I am going to have a Facebook chat to help get some questions answered. Just looking into the details on how to do so since I am not a doctor, I am simply offering my personal opinions.

I’m open to setting up a event here on my page and starting
a Q and A session.

What do you think It is my way of Thanking all of the blog readers and parents who have come to me for support online.

Let me know in the comments below.


Our new car

It has been a while since my last post I must apologize because the longer apart my post are the longer my post have to be.  Bare with me it’s not too long.

I have had many moments this month where I look back at where our family was almost this time two years ago and I’m still in shocked at how far we have come and how much we have grown together.  In fact one of our mile stones that our family has is Adam and I have been together for 10 years February 23 back in 2005. When we first laid eyes on each other and had that magical kiss at the Greyhound bus station.  That person that got off the bus then is so very different then the person typing away at my keyboard.  I am not just talking about how I look on the outside but how I feel on the insides.  We met though a mutual friend that introduced us and we like to say we ordered each other online.

I had a similar adventure with my first car shopping experience which was not as daunting as I thought it was going to be. We ordered our car online or should I say found on autotrader and a good friend of ours to give us some feedback and tips.  Hubby and our buddy went to shop for cars on my Birthday which is another milestone all of it’s own I’m 32 and my birthday is Feb 10.  We looked at a colbolt, impala and a few others but mine and hubby’s favorite was the Lincoln Continental what car. I like sporty cars. Who knew? There were so many cars one car we placed a offer on plus a trade in for our van but the guy didn’t budge and we couldn’t offer any other price but we sure loved the Lincon car. We decided to look and see at other cars and then thought about cars further away we got lucky and found one in Ohio that met the price budget we had and met the miles we were looking for and found a 2002 Lincoln Continental.

I am for one not a car person, the reason is I don’t even drive. Hubby insisted I have input as it was our money that was going to be spent on this thing and it was a huge purchase. He had a few things he wanted but I got to pick the look feel and ect. I did my research on autotradder and found all kinds of Lincon’s so did my hubby and our buddy, we ended up liking this car that was in Ohio just the right miles and perfect price. Off the guys went to pick up the car while I stayed home with the kids. The Michigan to Ohio drive for the guys was in a blizzard. After a drive to Ohio in a blizzard in white out conditions (yes I’m surrounded by crazy people) and more then half of our income tax refund spent.  We own A very nice used car that is almost brand new. Low miles and a nice price tag that fit our budget and we finally get to sell the mommy van and ride in style. Did I mention they did this on Valentines day? who needs flowers when you can get a car?




2002 Lincoln continental. Our new car


One of my favorite part’s about the car it has a window that opens.


Tan seats and comfy looks great and has a multi dis cd changer to keep the kids happy. We found all kinds of bells and whistles 


It’s a used car but inside is pretty much new

There is so much more things that have kept me busy this month from blogging and I’ll post about that stuff in another post. I just wanted to share some of the good news that we finally found our car and were both very happy with it.

I ordered the car online just like I ordered my husband online. I like pretty sporty cars apparently who knew.  My first time car shopping was rather fun.  What was your first time car shopping like ?  what do you think of the car?  let me know in the comment box. 

Thanks for visiting 




mom raises child and both have 22q11.2 deletion syndrome



A new ADHD med started tonight and it is a success (so far). Bella has asked if we can keep it. Bella has noticed how much more she can think and her head does not feel funny she says.
We have a name for Bella’s non-epileptic spells they are called vego vesso there is no med that will help with it in fact meds for Vego vesso spells will hurt more then they help. We can watch, monitor, and call the neurologist if she has any spells. Bella falls asleep in class and has had some impulse control issues here at home but so far no changes to behavior modifications.
Bella, Adam and I all love her new neurologist. Bella will soon see doctor for meds waiting on a referral but the neurologist is glad to help until Bella gets an appointment with the med doctor she referred us to. Bella started to see a therapist and we all like her and has been helpful.
Bella has started at Western for Bella’s speech and it is every Monday at 5. Bella has 80% hypersnale speech it’s called vpi. We are correcting her hypersnale speech and are considering a palatal lift it looks like a retainer I am very excited and we have been very busy dealing with this doctor and that doctor. I have called Michigan alliance for families and did a intake for a referral for a advocate to show up for Bella’s Iep meetings and parent teacher conferences to help with any future issues with school. I am sending a copy of the IEP and emails to help assist with the first step of helping learn how to be a better advocate for my child in her IEP. Next week Bella will see a gasterologist Bella wet’s the bed at night still and wear’s goodnight she has finally started to sleep soundly at night with her leg braces for her cebreal palsy and muscle relaxer that she is feeling rested finally without crying in pains from the knots behind her legs.
Bella and I both got new glasses we can see with our new glasses and now both of us are saying hey I can see this now and that were comparing notes. We have astigitizm, cannot see far. The only difference between her eyes and mine is I have the first stages of cataracts, which are little dots behind my eyes that cause migraines and I see flashes since wearing glasses I can focus more on what I am typing and can spend more time at the computer working on my blog and social media stuff.
I turned 32 this week it was not nearly as bad of a feeling like turning 30. I do like to tell everyone I turned 21 again. I got a new hairdo and my look feels completely different yet I feel more like myself. Every year that I get older I am often taken a moment to self reflect over how much we have achieved over the past year. This year we have done so much and life is going well. I think I may have found that balance button but I know as soon as I say it another crisis will arrive so I’m not going to jinks myself but rather just keep plugging away one minute at a time.

#RockTheLunchbox, #RockTheLunchbox / @influenster Amanda Ripsam

Amanda Ripsam's photo.
Amanda Ripsam's photo.
Amanda Ripsam's photo.

Amanda Ripsam @RockTheLunchbox Influenster

#RockTheLunchbox, #RockTheLunchbox / @influenster) I was given this product complimentary in your post.

By Amanda Ripsam

I live in Sw Michigan, I shop at Wall-Mart, Meijers and Target the only place that I could redeem the coupons was at Target. Wall-mart didn’t carry the products neither did Meijers I went to Wall-mart and Meijers first not thinking about doing a product location just to see if the local stores had the products which they didn’t. So if you live in Michigan Target is the place to get them especially if you live in a small town in Michigan like I do.

Bella loves after school snack time. I got the coupons to get these products free at Target from  Influenster in exchange for my honest opinion. The Rudis bread was not called Rudis here it was in fact called udis in Kalamazoo, Mi or at least the only thing that was stocked at my location in Kalamazoo was Udis. Rudis bread is a freezer item and it wasn’t stocked I couldn’t get to try the bread and was a bit bummed about it as it took forever to look for it. I didn’t get the bread but we got everything else and Bella says it’s 5 out of 5 stars. Bella loves cheese, crackers, yogurt and the fruit snacks. Bella also loves the juices we still have some I think I’m going to continue buying the fruit juice it comes in handy for traveling in the car back and forth to her doctors appointments. We also got Pizza Bagels, and Bella was so excited she wanted to try it as soon as we got to the car and didn’t want to wait until we got home. I love the convenient packing’s and I was able to meet the request for her to give it a try. When we got home I put the rest of the stuff on a plate at least what was left of it and she was glad to be a model for the products. I’m keeping this review short because the photos speak more words about how much Bella likes the snacks more then I can type about how much she loves the snacks.

I received these products complimentary from Influenster for testing purposes.

A lesson in Poverty- A personal experience.


This time two years ago was one of the worst times in my adult life. I was stressed and I was frustrated and I was embarrassed. I was scared and so very sad. I didn’t know it then but I had faith that we would be ok. Even when at times I didn’t realize that eternal energy that is undeniable because of that the still small voice that gps within myself that made me come alive was inside growing stronger because of the challenges our family faced during those years with out the energy we would not be as far along as we are today if it wasn’t for that energy of spirit that connected us to one another.
Before we met the pastor and her family, I self referred to Dhs when we were in Grand Rapids in hopes we could get assistance for our family but we got very little help. The shelters we called were full and we didn’t want to separate our family and have me go to a women’s shelter or my husband go to a mens shelter even at that beds were not given away it was the kind of shelter where you had to line up each night in hopes of a bed.
so we reached out to family members who couldn’t help us but got us in touch with someone they were good friends with my husband knew the pastor and her family I did not. I had to go by blind faith. Being a family who was homeless living in a camper with strangers. How could I be there for anyone when I didn’t even want to be there for myself. It don’t matter how far you might rise at some point your bound to fall and when I did I prayed, yelled , I often was found with the mercy cry the pain in your stomach and head sniffling snot cry’s to God. I gave so many tears and fought back the urge to pack up my things and go back to Canada. At one point I didn’t see any hope, I had no self compassion and my faith kept sliding back and forth. My challenges with immigration was looming over my head and I felt a strong pull to go back home where I knew I would get health care and I would get housing I lost something I would never get back stability and hope.
I had fallen and failed more times then I can count and I was turning 30. I have a driven obsessive personality but that was the year I was driven into deep depression. Obsessively I couldn’t get out of my rut. I would talk my own way out of things and try to hide.

I was having stomach pains that later got diagnosed a gasteroparies beginning to discover multiple health issues of my own on top of the rare genetic disorder I have.

In the back of my mind everyday was having the fear of the cost of my own health treatments. The genetic disorder and my daughter was needing to continue to have health treatments with multiple doctors. We had visits to attend, my husband was looking for work but with a car and not enough money for gas how could he maintain a job how were we going to manage the balance. I can not work, I can not drive I had to rely on everyone I could to get to and from appointments I discovered medicaid had transportation serives I started to use that to save us money and free up any time for my husband to look for work online and with Michigan works The only income we had was ssi and only received 500 dollars a month. We applied for housing assistance and the waiting list was over two years long. My husband and I were getting help with food stamps and the 500 dollars went towards keeping the car running and basic necessities some of which couldn’t be met. I sit and type and feel the pain of having to ask for assistance from this place or that place and one of the places was Christian neighbors. The. Christian neighbors helped us with first months rent the church helped with security deposit and my husband was hired to work for a marketing company that sells different products the main one being Hp. My husband had over 100 applications, he had applied for over a year different places that turned him down for one reason or another he was always the runner up to get the job but never first pick. he works 30 hours for a company and on the side he will help with computer repairs making money here and there. Our income went from 500 a month after three months of fighting with ssi our income went up. My husband brings income 30 hours a week. Just before Christmas and after Christmas he brings in about 23.
The shame and guilt that ate at my soul are now gone, we just got our income taxes and I now have the money to finish the immigration paper work, we are even looking at a new to us car we have been able to pay bills for the past two years and not have anything default. Our rent is always paid on time and we always have food in our cupboards. I have started a rare genetic disorder support group that meets once a month, we both sit on the board and we found a passion helping other parents and people who have been where we were. Two years ago I wouldn’t think I would be able to say we have our own place we got rejected from the projects and our rental applications were denied but when we went to Christan neighbors we found a lady who helped us fill out forms and pointed us in the right direction when she helped us get a appointment to meet with the rental manager.
Connections helped get us out of the poverty we were facing, we do have to live in the poverty line still but we are just below it we are only getting 4 dollars in food stamps you know you’ve made it when food stamps are taken away.
I hope this will allow you to find comfort, hope and compassion towards anyone who has faced poverty not everyone wants to be put there and it’s time to stand up and step out in faith to help one another how ever we can even if we don’t have anything to give some times a little time and faith of a muster seed is all that is needed.

Rare Genetic Undiagnosed Support Group – Sw-Mi-Kalamazoo,

Parent support group

Rare-genetic-disorder support-group-Kalamazoo-SW-Mi

Rare Genetic Undiagnosed Support Group-

If you are part of a church,mops group,mommy meet up group and have a parent with a child who is looking for support please refer them to our group. This is a local group that meets in Kalamazoo, Michigan.

 A Group that was started by mom’s. (I am a 22q adult also raising a child who has 22q deletion syndrome.) Another mom has a child that has angel-man’s syndrome. The two of us started meeting once a month and our hope for this group is for parents who have children with rare genetic disorders not just the ones listed above can come and find connections with each other.  If your looking for a supportive safe group that meets once a month this group is for you. We hope to meet many of you there.

Monthly on the second Thursday
McDonald’s, West Main Street, Kalamazoo, MI, United States

Parent to Parent of Southwest Michigan
Created by
Support group for parents of children with rare, genetic or undiagnosed disorders.

Who’s responsible for shoveling the sidewalks, City or apartment complex?


Who’s responsible for shoveling the sidewalks, City or apartment complex? Let’s not play the blame game before a kid get’s hit by a car.


When Bella started her speech therapy two weeks ago, She missed the first day because we got a call about it a week before hand I didn’t have transposition set up.

This week and last week I get transportation set up and snow says for Kalamazoo schools means snow days for Western where Bella’s speech is.

Last week both Tuesday and Thursday was closed and the Thursday before that didn’t work out do to snow. Then about 30 minutes ago I get a call from them saying they are closed. I was all ready, transportation was going to show up so transportation had to be called to cancel the lady coming to get Bella and I. I had Bella today all set and ready to be picked up at 12:30 infact I called the school and they were going to have her ready to get picked up. Now she has to take the bus home. She’s going to be one upset girl and I really don’t blame the kid. I only hope that she can be ok with it all. I am sick so sick of snow.We walked down this to get to the bus stop. Thanks for shoveling the side walks 10980718_10155145403245375_8228789424023958062_nThanks for shoveling the sidewalks guys. 

Starting speech therapy

22q faces-face of 22q-vcfs-digeorge-raregenetic-mom-daughter-adult-with-22q

Amanda and Bella

Tomorrow we are going to finally start speech therapy for Bella. The 6 week intensive speech therapy program at Western was suppose to start for Bella last week. The first day was suppose to be last Tuesday but we couldn’t make it because we got a call the week before letting us know the program started and we ended up with not enough time to get transportation set up. I was all ready for Adam to take us Last Thursday but we had a snow day. Friday Bella went to school then we had the weekend on Saturday this week Bella got to get a new pair of eye glasses. I will not be able to show pictures of the eye glasses because we have to wait a week or two before we get to pick the glasses up.  Sunday we couldn’t go to church because the roads were bad and church got cancelled. Monday there was no school because it was a snow day. Tomorrow is our first day back after a few snow days and Bella and I are both excited we can have her go to school but she does have to get signed out she is starting the 6 week intensive speech therapy.

The side walks are full of snow and people don’t know how to shovel but I will be walking to Bella’s school to pick her up and I will be taking Bella home, our transportation will arrive at our place because transportation does not take clients from any where else other then home and appointment and back again.  I don’t drive and my husband will be at work so this is what we have to do.

Bella speech issues as you know are very mild compared to some of the people who have 22q11.2 deletion syndrome.  A bit of a back ground on Bella’s speech Bella has been diagnosed with vpi and hypersnality. At 80% a few years ago and this year at 90%.  The air flow goes up Bella’s nose when she speaks. Bella has large tonsils which at the moment is preventing even more air going up her nose when she talks. From all of the articulation therapy we have had Bella on we found it didn’t do any good for her in fact it ruin her vocal cords her vocal cords are strained like a person who has been training for singing only Bella was training for speaking every day to sound like the rest of us. Hi pitch hypersnale is common among children and they do tend to out grow it as they get older. What if Bella doesn’t out grow it ? How will she be precieved by peers in the work place with a hi pitched hypersnale voice as a adult? Bella does get frustrated with herself and with others when people can not understand what she says sometimes. When she crys or whines the pitch of her voice get’s higher emotional outburst over frustrations will happen and understandably so. Sensory processing disorder, Adhd, speech issues, mild form of cerebral palsy and a few other minor health issues and she has this spark this light that just fills a room when she is in it. Her warm hugs and the funny spirit that is inside her that is so empathetic and open to everyone she meets no matter age race or disability and my own wish is to keep that spirit inside of her and every decision I make effects her in one way or another. If we have surgery if we don’t have surgery she still going to be the persistent strong, stubborn redhead we all know and love.  Her middle name is Grace and little did I know when we gave her the middle name how much she would handle life with the grace and gumption she has now. I’m so proud of how far along Bella has come.

Our hope in Bella attending the 6 week intensive speech therapy at Western is to help Bella be more confident when she speaks, to strengthen the top of her palate as she has three small weak spots in her mouth. If we can strengthen those weak spots we can hopefully also avoid surgery. Surgery at the moment is not a life or death issue, surgery for this does not have to be done right at this moment or even done this year. What needs to be addressed now while she’s still young enough is how to interact with other children who think she’s not as smart or sound as pretty as they do. Self confidence, self assurance and voice quality is what is being addressed.

Now I’m going to open up and share my own personal experience with having speech delay or difficulty.  I received articulation therapy at a public school in Toronto Ontario Canada with out knowing I had 22q11.2 deletion syndrome. I didn’t know I had what my siblings had because I didn’t show any issues other then seizures when I was little which I grew out of. I did have the ear issues and still do. I have gasteroparies but didn’t know that until just two years ago.

It wasn’t until I was 21 and all ready done with school that my dad and step mom urged me to get tested because I met my husband and they wanted a reason I would have to go back to Canada. I went back for a bit I did get tested and the toll emotionally it took on me. The lack of medical care and knowledge doctors nurses had to be able to help me figure out what to do as a Adult with this disorder. The lack of knowledge from the 22q foundation had on their webpage about adults with this syndrome not knowing where to start or what would happen if I had a child with it. I knew from my siblings diagnoses that I had a 50/50 chance of passing the syndrome on and I did. We talked and I can still have children but I have decided not to give birth to any more children because our family is complete I am a step mom of three kids who are teens two boys and a girl and now we have Bella evening the score.

I can’t help but think what if I too have Vpi and out grown vpi or my palate strengthen naturally over the years I was active in theater, dance and music. I was always in a choir and I took voice lessons in drama to help project my voice and make it louder to project it across the stage. I admit I am a terrible singer but I do enjoy singing still usually alone or with Bella.  lol

As a mom I now have no problem raising my voice, speaking in public I can do but (unless you are asking me to read from a script then I am just not going to look at people) because I can’t read and look up at the same time my adhd just does not allow that to happen.

Learning more about Bella I am also learning more about myself and seeing myself in a different light. I am learning acceptance of myself flaws and all I’m a awesome person and anyone who negatively  puts me down or insults as I have run into online in groups because my views of my own syndrome is a rare trait to have I am not in research mode trying to find all the answers or showing people what I know or don’t know and I’m in competition with no one. I know what I know because I have personal experience living with this syndrome and I don’t need a report that says I have heart issues when I been discharged from three different heart doctors all saying I have  very strong healthy ticker and so does my daughter.  No two people with this syndrome will have the same exact diagnoses and all we can do is treat each symptom as they arise.

 I had to learn to do these things divide the symptoms and treat each one one step at a time because my daughter needs a person there for her and not see her mom have her nose in a medical book trying to play doctor and diagnosing people. My daughter needs to see her mom not crying so much or fighting with doctors as children see that and internalize that stuff which isn’t healthy and prevents healing the first step to healing is acceptance the rest of the stuff just flows outward.   Bella needs see true acceptance of 22q11.2 deletion we can do it the hard way with my nose in a ton of medical books learning all the medical jargon which I did when I first got diagnosed myself or we can trust that the doctors who specialize in this syndrome know their stuff and we can take their advice and if it is sound go with it if not we are able to move on and find a better place for treatment which is why we are still on the table about surgery (no pun intended there)

The reasons I am so invested in what I do with her and with this blog it’s so other people never have to endure the unknown, the scary place or the place of isolation and non acceptance of the reality of living with 22q.  I hope you can find some reassurance and inner peace among the blog post. All of us have our own challenges when coping with this syndrome I just want to offer what was not out there over 10 years ago for me when I first got diagnosed with this. As I learn about Bella’s issues with this syndrome I learn about some of my own and I hope that is what you take from this blog. Learning about some of what we are dealing with and not dealing with and realizing that we each don’t have to try to be like everyone else we are all born unique and wonderful just how we are.

Thank you, so very much for reading my blog it humbles me and I appreciate every page viewed, every comment or email and I look forward to getting to know each and every single one of you.

If you have a comment you can leave it in the comment box below.

speech therapy

Speech therapy .  By Amanda Ripsam

The icy roads here in Otsego made us miss Bella’s first week of Speech therapy at Western Mi. Bella is going to attend the 6 week speech program in hopes that her palate can get stronger with exercises or that we can do some thing to help prevent palate surgery.

We didn’t go on Tuesday because we got the call for us to start the 6 week program the Week before and I didn’t have transportation as hubby works. Everything is all set to go but on Monday in class  Bella did a falling a sleep spell the teacher emailed me later in the evening about what happen. I sent Bella to school the next day on Tuesday she seemed fine but there was something off Wednesday morning, her body was very warm her tummy was hard and she was just getting over a sinus infection and ear infection.  Bella  ran out of the amoziciallan this week for the sinus and ear infection. I was all set to get Bella to school the next day Thursday but she ended up with a Ice day, I would have called it a snow day but school was closed do to Icy  roads.    Bella’s speech place was also closed up. We will start the 6 week intensive speech therapy next Tuesday it will go twice a week every week for the next 6 weeks. I will walk to pick Bella up from school and take her home so we can get transportation unless of course hubby can swing buy really fast and get Bella from school.  poor kid is not looking forward to walking home from school with mommy but it’s only 6 weeks. I know hubby will help out at least when the weather isn’t behaving with us.   I had to call medicaid transportation and get everything set up but couldn’t get a ride until next week anyways so it worked out just not to my liking.  I’m going to add the medicaid transportation number in my list of resources they also do gas reimbursement.  Over all the first month of the year went great Bella is even going to get new glasses soon.  Bella wants sparkly pink glasses I sure hope we can find them. Her insurance covers two pairs of glasses.

Now on to February.  The month of my birthday I was born Feb 10 1983. I met my husband on Feb 23 2005, Then there is valentines day, The social functions of the month are the last few social functions for a while. I am looking forward to spring break and summer break so is Bella. I think I’m going to make a countdown chart for her so we can both count down the days.

Who else is looking forward to spring break and summer vacation?

Mail call: Quacker-Popped-Rice-cakes-Review-Bzzagent

Mail call: Quacker-Popped-Rice-cakes-Review-Bzzagent

By Amanda Ripsam

I received a box containing two bags of sour cream & onion, Two bags of cheddar cheese and one bag of caramel corn flavored rice cakes.  A review for Bzzagent and Quacker Popped In exchange for my 100% honest opinion here is my review.

Bzzagent, Blogger reviews Quacker rice crisps-popped.

Bzzagent, Blogger reviews Quacker rice crisps-popped. Amanda Ripsam Review

It didn’t hurt the gasteroparies,or hernia or gallstones so it’s all ok to eat. I normally eat foods that are more nutrient based.

I did find that it lacked any nutritional value and it was mostly empty calories. I also found Quacker Popped Rice crisps just really salty and I need lots of water to drink with it. I wish the sodium content was lower.

320 mg of sodium for every 17 chips!!!

Quacker-Popped-Rice-Crisps- nutritional values,

Quacker-Popped-Rice-Crisps- nutritional values,

Do your makers not realize that’s about half the daily sodium needs in just 17 chips?

If you eat the entire bag you have gone pass your daily sodium needs.

My 7 year old loves anything with Cheddar cheese and she was excited that there was a bag in her backpack for a snack at school.

I loved the flavors my favorite was the caramel corn and if you don’t eat the entire bag in one sitting 17 chips at a time.  Quacker Popped Rice Crisps tastes great like eating a chip with the exact same nutritional value.


List of Bella’s diagnoses

This is Bella


This is Bella looks like your typical 7 year old right ? while she has 22q11.2 deletion syndrome and mild form of cerebral palsy.

Often online I get conversations asked and started with does your kid have any of the issues associated with velo-cardio-facial syndrome with 22q11.2 deletion syndrome and the answer is yes but very mild in how she compares to my siblings and father who has it. I too have it my issues tend to mostly be with stomach issues as I have gasteroparies

I hope this list helps others with the answer to this question.

Velo-Cardio-facial syndrome with 22q11.2 deletion syndrome

Otorrhagia of right ear

perferferation of tympanic membrane


restless sleeper- do to restless leg syndrome and low iron levels

mild form of cerebral palsy – tightness behind back of legs and foot wears leg braces for treatment but does not need to wear them all the time just when at home doctor does not want her  in them at school.

Bella has Vpi – she speaks though her nose and has three small dents in her palate that cause her to have air go up her nose

Large tonsils but helps prevent the air going up her nose

Adhd both physical and emotional diagnosed at age 4 with a neuro evaluation at the hospital

Hypersnality which correlates with vpi issues  we will be attending western intensive speech therapy

Spells that look like sieuzres but are not and she is to never have seizure med.  Triggers are temperature dis regulation and sensory processing over stimulation or extreme exhaustion

Low iron levels

Low average iq but not below average (she is very smart and just needs the right help to get task completed)

Bed wet’s at night ( were working on this with starting with gasterologist this Feb )

sensory processing disorder

Possiable language processing disorder which we will find out more when we attend western

constipation chronic

behind in both fine and gross motor skills

wears eye glasses for her stigmatsm ( we got though at least 5 pairs every year but insurance only covers two)

Needs Ot and Pt services other then at school to help work out knots behind her knees and tightness in foot and legs

has crowns in upper and lower teeth do to cavities from having her anti seizure med ( when we thought she was having seizures we flavored her med and that got stuck in the back between places of her mouth she currently has four crowns and will need to get two more done in the summer

The list of doctors Bella has is litterly from head to toe for almost all body parts.

We see the craino team at u of M (Michigan )

we see the team at rambling roads ped in kalamazoo Michigan

If you would like a more detailed explanation of what each of the terms are please leave a comment in the comment box or email me. I’ll be happy to assist any way I can in helping you under stand what Bella endures.



Bella has ear infection and sinus infection

This is Bella

Merry Christmas and happy New year.


Bella has been a trooper this year and doing so well with handling doctors visits we even had a snow day in the mix of it all. I’m looking forward to being back on routine next week. I’m going to attempt to get all the appointments needed for the month set up for both her and I.

Bella stayed home Thursday and Friday because she had a mini spell where her eyes did a flutter and she was just not doing well at all. This stuff is hard on her system to handle I wish educators and doctors would look up 22q11.2 deletion velocardiofacial syndrome digeorge syndrome, vcfs, 22q. I wish they would understand how mild her ceberal palsy and all of the above effects her ablity to perform and not perform in school. There are no two people with this syndrome who have this who are alike and that makes trying to find the right plan that much more challenging.

That’s why this blog is something I’m so passionate about it’s to help other people who are out there so they don’t feel the isolating feelings my daughter feels in the class room. I remember crying that no one wanted to play with me.

I too had many doctors visits but this year we are doing well and there isn’t that many absents. Not even really at 10 if you don’t count the first week she had some lateness because of her social issues getting in the way and she did the protest of her not wanting to be at school.

I am thinking I might as well just start making the appointments for any time I can get because I’m dammed if I do and dammed if I don’t and I refuse to allow my child to be medically neglected like I was when I was growing up. I also refuse to allow her to fail and fall behind just to be pushed though the education system my daughter will not fall though the cracks.

I’m looking for a way to balance the medical needs vs the educational needs and if anyone has that balance button it would sure be nice to have right about now. Educational and medical needs are not the only issues she needs addressed it’s social and emotional.  I only get her a few hours at night and on the weekends do you know what times doctors offices operate that’s right same hours schools operate.  I’m going to work and do my best and if that’s not enough then it’s not enough I’m not going to be shaking and hiding nor will I be quiet. This is my quiet place yes (my blog) but I am going to stand up for myself and my daughter like I did last year, the year before and two years before that. ( we have had Bella in some kind of school setting since she was 18 months old)   She’s has a Iep and is mainstream in regular large class settings. I am thinking it’s time to start planning a change to help her and others who are struggling like her.

Did you ever have a experience like ours ? if so feel free to share details in the comments about how you managed to cope with it?



Quote for 2015-  I love this it’s like my vision board which I am working on creating.

balanceI really love this quote. I think it’s fitting on where I’m heading for 2015.  My focus  so far has been on cleaning out the old and replacing negative stuff with the new positive stuff.

I am only focusing on what is good and what feeds my soul.

What’s your favorite quote for this year ? Where do you think this year is heading for you?

let me know in the comments below.

Top 25 things to achieve in 2015, New years goals,

Top 25 things to achieve in 2015, New years goals,

Stream of Consciousness – #SOCWeekend #blogging #freewriting



Stream of Consciousness – #SOCWeekend #blogging #freewriting-

Blogger, Amanda Ripsam

Blogger, Amanda Ripsam

This post has been inspired by Love, Jaime’s Stream of Consciousness Challenge. The assignment is to write freely for 5 minutes. I have wanted to try something like this for a while and I am happy to join in.

Topic what’s on my mind.
10:00 pm- 10:05 pm
Wait it’s the 12th of January all ready. Was I in a fog the first part of the month?
Where did the time go? I want my time back. I have been feeling energetic and motivated one moment and then very exhausted and can hardly handle the gasteroparies the next minute. I’m so sick and tired of being sick and tired. Sunday I missed out on church because usually be the end of the week I am spent on whatever project I been focused on for that week. This week was cleaning and de-cluttering. We also have a soft spot that is starting to leak in our roof. The repair guy checked it out and said that as long as it does not start to leak water we are ok. He did manage to fix our cupboard tracks so the cupboards now stay put and fixed the lazy susan. So far so good but the snow is making a soft spot and I’m rather annoying that they can’t fix it until spring or the snow starts to melt I want to get up and do this or that. I started the 14 week cleaning and de-cluttering challenge they have in a face book group and I found that to be a great start to my new year to get me moving even hubby helped with organizing the kitchen and he was so glad to help see post here ( now that the kitchen is clean the next room is the laundry room while living in a two bedroom apartment I don’t own a laundry room. I have a area for storage down where the washer and dryer are but there isn’t anything to do down there. I have laundry piled up high that I been putting off because 1 I have to fight for washing machine time with 12 other people who live in this apartment complex and 2 there are only two washers for all 12 of use to share mind you there isn’t only 12 but each of the apartments have a few other people living in them as well. So when a person get’s the change to get to the machines they take either all day or half the day to do a few loads of laundry for the week. The laundry mat is in a close by town but you know I can’t drive and get there unless hubby takes me and he and I can’t ever seem to get on the same schedule with his work hours and my hours I am left to fend for myself in the world of laundry and fighting my limits and everyone else that has the energy to beat me to the laundry room. I am frustrated that my stomach gives out on me and there isn’t much I can do not able to qualify for any type of surgery because of my esophagus I have to lose weight and I can’t because I can barely get 900 calories in me a day. I do a lot of soups and smoothies and juicing. I can eat one day normal but it all sits in my gut for days at a time and now my stomach decides that it’s time to get up and go to the bathroom. I know tmi but it’s whatever is on our minds and my mind sometimes can be a scary place.
Times up

Want to participate? The rules….

1. Set a timer for five minutes. (Or keep tabs with your computer’s clock.)

2. Write freely. Any topic. Whatever is on your mind. It doesn’t even have to be completely cohesive.

3. Tag on social media with #SOCSaturday or #SOCSunday and link up below. You have all day Saturday and Sunday to join the link up. It closes Monday morning.

4. Click around and give some comment/blog love.

Stream of Consciousness Saturday (or Sunday!)


<a href=><img src= alt=Stream of Consciousness – free writing. /></a>

Kitchen wish list- Dream kitchen



Hubby and I a few years ago.


Hubby and I spent 3 hours in the kitchen organizing cupboards cabinets and drawers oh and the pantry and top of fridge. Tomorrow is microwave, inside fridge and wiping cabinets we lived here for two years finally going to start making it ours. The process was frustrating for me as I had to explain what all was in my head. Hubby was a good sport about it and listened to my many short girl issues I have with our kitchen. He put things up high that I could care less about if they were up high or not. We worked on a project side by side with tears in my eyes facing reality this is Home. I was in my own grumpiness saying how  I hated my kitchen. My Kitchen our kitchen. It took two years for this reality of being home to sink in. For years it was always someone kitchen we had lived in someone else home in fact two someone else’s homes until just two years ago. We have both come a long way in 8 years. I am glad to have stood by and grown with my hubby.

I would have shared before photos by my camera was in the cupboards being kept in a safe spot so I could find it. I have my camera and now I can share with you some new photos of what the clean organized kitchen looks like.


Fridge cleaned even top of it. The Tessimo moved to it’s new place and the dishes were from just that nights dinner.


Found a way to use the cupboards that are long and narrow inside. The papers on the door is a list of what I can’t eat do to gasteroparies. I have a list of rules for when it time for kids to do kitchen so they know what’s expected.


clean sink, clean counters, Lazy susan does not close but I have pot’s and wok in there.


instead of food in the cupboards we moved it to the shelves making it a pantry. Microwave is next to it and bathroom on other side of wall.

There you have it. I do think I need some more kitchen appliances I got rid of some and I think it’s time to add some ones that I can enjoy using every day.  Here is a list just to keep track of the things I would like to buy in the future.

  • Mixer
  • Juicer
  • Keurig to replace the Tessimo
  • baking pans
  • new pots and pans
  • mixing bowls
  • cooking utensils
  • silverware ( there is a spoon monster that is probably hiding out with the sock monster.
  • I need baskets square ones to store things in that are in the fridge
  • flower, sugar jars
  • wall decals I can’t paint but I found some nice wall decals online I would love
  • Kitchen table so we can eat as a family but I have to find a small one I seem to only be able to find card table sizes or larger family sizes I want a medium size
  • aprons
  • hotpads
  • kitchen towels
  • new rice cooker it was up high and it fell and cracked it’s put together still by ducktape
  • griddle
  • george forman

Maple leaf cookie cutters my friends suggest I need to do Canadian theme since  I was born and raised in Toronto Ontario Canada and live in Michigan maybe a blend of both worlds would be nice. Who knows maybe someday I’ll get lucky enough to review some items I really want and enjoy some blogging perks. :)

What is on your wish list for your kitchen ?

On living in Toronto

On living in Toronto- A old post I wrote after I had Bella.


So living in Toronto, I learned a lot. I learned a lot about myself, and God, about people, about friends and relationships. I grew up quite a bit, grew out of the 20 going on 18 that was happening while I was living at my grand parents hanging out with mostly high schooled (co workers who seem to be the only ones who had time for me), not that those people were bad people or anything, I just think that it was time for me to move on ya know? So, here is what I learned..

-Grand Rapids is WAY smaller than you may think.
-$40 every two weeks is more than enough to live off of, if you think you cant, then you’re spending too much :)
-There are so many more people to get to know, people say its a small world, which it is in regards to the way we are connected to people, but…there are SO many people out there with different views, ways of life, beliefs, I just wish I could get to know more of them.

now on to more serious things…Its amazing how the life experiences you have, can change the way you look at life. The little things people say here and there, the way people act, how you start to change to the people you hang around…… Some of those things just start to, little by little, change who you are, some for the better, some for the worse.

I just want to tell everyone that is from Toronto that ends up reading this, that ALL of you, every one of you, I would not exchange my experiences with you for anything, even if it was awkward, or difficult, you have given me memories and friendships that I will always remember, its all good.

-I hate that the good things in life can be used against us.
-I find it very unfortunate that relationships, going that extra step, can in the end, ruin friendships. How the connections that start to come together, hurt so bad when they are ripped apart. So many times do you hear about friendships that are close, get ruined when one of them begins to have stronger feelings. Why is it that when some people just want to get closer, things get torn apart? Something I’ll find out when I’m old I hope :)
-Satan can use good things to pull you away from God.
-God can use bad experiences to bring you closer to Him and mature you’re relationship with Him.
-Do NOT compromise your convictions.
-Go with your gut.
-There is a difference between tolerance and discernment.
-As Christians we’re called to love people, that means helping them when they need help, not to judge, who are we to judge when we are all guilty of the same things. No one person is better than the other, sometimes we think, “well what they’re doing isn’t NEARLY as bad as what we are.” NONE of us are righteous, no not one. romans 3:10. its just too bad that the people out there who do judge, end up pushing people away, when we should be bringing them closer. This is the hardest lesson I’ve learned.

I’m writing pretty scatter brained I think, but that’s ok, its for me anyway :)

moving on…
If I didn’t have God to turn to in rough times, I don’t know what I would do. When things get pulled out from under you, where do you go? Do you go to your parents? I love my parents to death, but sometimes it just doesn’t cut it?
my father disowned me when I moved and my mother and my relationship is just starting out now that I am older.
Friends? They can only give you so much insight? And usually they too are far away from where you are at in life to understand you fully. What happens when everyone around you isn’t quite helping you dig up the peace you need? How can you handle that without knowing there is a God that is RIGHT there, helping you through it? going through a 9 months of miserable pregnancy and not having my own family around me for support and having to depend on Adam family. I am SO glad that I know that no matter what happens, everything is in Gods plan. Everything that I’ve gone through/am going through, is making me the woman God wants me to be, for my hubby, my kids, my family, everybody.

-I wish that I could KNOW what I want, rather than LEARN what I don’t want…follow me? Why must we go through hardships in order to learn whats best for us?

Everything is kind of random, but a lot of it are things that are heavy on my heart right now. I hope that you can take some of these things and keep them in your thoughts, hope it helps you grow while I’m  growing. yeah…

Importance of Being Yourself.

Importance of being Yourself.


10291065_10154760636280375_2124258575140755084_n                                                                          Me I am 31 years old.

Living with a rare genetic disorder called 22q11.2 deletion syndrome I have some features on my face that make me look younger the

n people my own age. In school I used to get teased. I have red hair fair skin blue eyes and I’m only 5 feet 3. Kids would say I belonged in a grade

or two lower then what I was even though my scores in school either matched where they were at or exceeded. I got teased for being brainy. I was ok with that brains I knew when I grew up would be sexy. My husband sees my beauty outwardly and inside and his opinions is all that matters when it comes to my appearance.

I could cry I don’t look like a model or I can accept my disorder as life could be worst I could be in miserable denial with it all but where would that lead me? in a self consumed search for all the answers while trying to show up this person or that person. I am in competition with no one why because…

I am uniquely and wonderful made.

So are you!


8 year wedding anniversary. Dec 29 2006

Our wedding photo Dec 29 2006 8 year wedding anniversary

Our wedding photo Dec 29 2006 8 year wedding anniversary

Today is our 8 year wedding anniversary. This photo one of a few wedding photos we have because we didn’t have much money but have a lot of love and decided to get married in our church it was a small sized number of people who attended because people on my side of the family couldn’t either afford to travel to Michigan or get a passport in time for us to have the wedding before Bella was born and I knew if we waited until after Bella was born we wouldn’t have much time to get a big wedding pulled off anyways. The invites and excuses from people who couldn’t or wouldn’t even try to show up the ones who could couldn’t do it do to waiting for passport issues as I am originally from Toronto Ontario Canada. Then there was just to much stress from my personal health issues that were there during my pregnancy the doctor put me on restrictions and bed rest do to my own rare genetic disorder and the multiple symptoms I have with it.

I so wanted to be married to my husband and he was a great sport about it all and said ok we will pick a date the church has and the wedding dress I originally picked out and had paid for didn’t fit I grew so much with Bella that I needed 4 dresses to cover me lol I just picked out a suit and Adam agreed to have matching colors and he was so handsome. I was not feeling as adequate but what pregnant bride really feels that way. I just knew this was the man who saw my flaws messed up family and still wanted to marry me. :)  He even drove to Toronto, Ontario, Canada a few times and delt with some very upset people that I was taking off and starting my own life. Now if you know those people you know what he faced and if that isn’t love I don’t know what is.

We got married in the Church on Dec 20 2006 but forgot the marriage license at home so we got married again and said our I do’s on Jan 5 and according to the state of Michigan Jan 5 2007 is also our wedding date we have a great story don’t we. ha ha. The lens on the camera that took our photo’s had some pop spill on the lens so this photo was one of a few I had to touch up in Photoshop and restore. Good thing I do photo edits. I have a few others but this one we both love.

This year we found a local restaurant I want to check out and we plan on our date night on Saturday. I know why not today it just the way the pay checks crumble with hubby’s job. We were living in someone else home and he had odd jobs. We have come so far we have our own place and hubby is working and were doing better then we were back then.

Our marriage is what has been most important rather then the wedding anyways right ?