Feel good blogging challenge Day 4- A common misconception that really annoys me

Blog Challenge #4: You Are the Teacher

Write a blog post sharing
the following:

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    write a post in a Q&A format that answers a popular question you get asked frequently

    This question should be one which contains a misconception that really annoys you. Use this as an opportunity to educate your audience on expectations!

    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. I am a inspiration to a answer to this question and so are so many of the other adults I have met online. 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.

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    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. 

     

Day 3 Feel good blogging challenge- The history of DiGeorge syndrome

Hello everyone welcome to Day 3 prompt of the feel good blogging challenge.

 

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    Share something FASCINATING about your industry or work with your audience.

    Write a post sharing something that you’ve recently learned about your work or industry that’s highly fascinating to you, spun in a way that makes it valuable for your tribe.

    My answer: Was to actually 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.

    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.

     

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    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

    https://en.wikipedia.org/wiki/Angelo_DiGeorge 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.

    Day 3 was so much fun I really truly enjoyed opening up and sharing some knowledge with all of you. 

     

    I’m going to do Day 4 of the feel Good Blogging challenge.  I was running behind because Bella and I had a trip to the U of M yesterday to see her specialist.


    Thank you to everyone who is following along you guys are the best.

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Feel good blogging challenge day 2- How I became a entrepreneur.

Hello Everyone,  

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Welcome back to day 2 of the feel good blogging challenge

 

Did you read my day one prompt for the feel good blogging challenge yet ?

Today I  am just going to jump right into the questions and answers.

Here we go.

Tell us the story of how you became an entrepreneur!Here are some questions to spark your post: What initially drew you to becoming an entrepreneur? 

I didn’t intend to become a entrepreneur.  I joined a group of ladies who wrote a 2,500 word short story of their experiences with 22q.  I wrote and shared my story but it appears that the group stories went no where!

There was no funding to publish and all of the ladies in the group just up and left. Or maybe I was simply left out of the loop which tends to happen in support groups sometimes people discover their clicks and stick together and I didn’t get the memo. Who knows what their reason’s besides the people who started that group.

I decided that I would take on learning how to publish my own story, it was a natural progression of one idea leading into another idea that started a blog to share my story.

I was going to enter my story in competitions and magazines but someone told me to try blogging. I finally found a place where I didn’t feel ignored any longer.  I found a place where my voice was heard. I started to get into product reviews that’s where company’s hear your voice on what you think about their product and they send you stuff in exchange for a review. At first it was my fun hobby that I would share with my friends I called those post mail calls. I didn’t get my first client yet! My first client means to me someone who approached me and said hey I have this great campaign would you like to take part in it? I jumped at the chance it was for monster cereal my husband loves that stuff all ready I mean he stocks up every year when those cereals come out like it’s going out of style. I did the campaign for the cereal over on my blogger blog. I post about what I liked and I got a package in the mail full of goodies and gift cards. Then something fun started to happen I was getting products all the time to test and review. I started to get really good at reviewing products and met a lady who said hey there’s this lady who has a book published it’s 22q related would you care to do a review? We made a deal and I now get 5 dollars for every sale that rare genetics book makes. A light bulb went off and suddenly I thought hey what if I did this with other clients.  Book reviewing is fun. I signed up for other type of influenster type of sites where I get products ship to my house regularly. No I’m not making money but I am having fun getting to try new things. I made so far to date some sales from the book and a little pocket change that covered the cost of my domain.  Now along with sharing my story and passing out information about life with multiple health issues associated with the rare genetic disorder, I have discovered informational  products are a huge thing.

I also started to get parents messaging me and asking me questions and that is honestly my favorite part of the blogging experience helping others is a passion of mine.  I have met so many amazing parents who all have the same type of questions can my child become a functional adult? Parents of children with this disorder they hear some scary stories and assume that’s what it’s like for everyone who has this disorder. I enjoy being about to the person who can offer hope and compassion to people who just want to talk with someone with first hand experience. I would love to figure out a way to make money doing it.  What I have learned in my two years of blogging has been an amazing journey and I made some wonderful friends.

What challenges did you face?

My first challenge was cost and lack of knowledge of the technical stuff when it comes to blogging. When I did the switch from blogger over to wordpress I lost all of my stats and had to start over from scratch I also lost some loyal readers because I had so many changes.   I basically learn everything own my own or asked my friends online or by searching Pinterst and how to video’s on YouTube. The next step was finding the money to get a domain which I found an amazing deal on go daddy during the cyber Monday sales and I was set I pointed my domain over to blogger and was a happy blogger for a while.  I then discovered that blogger wasn’t really doing what I was hoping it would for me. Which was bringing in a little income so I could at least cover the cost of the domain.  I learned all I could with blogger and it wasn’t challenging. I got wordpress and started but the challenge was I had a free wordpress then I had to start over once I got my webhosting. I enjoy the plugins and the widgets so much better then the widgets over on blogger. However my webhosting is needing to be renewed in November and I am considering changing platforms over to webly or squarespace.  The technical stuff to blogging was my challenge after that being able to post is easy I still struggle with grammar and I think a writing class may benefit my growth.  I have a lot of people organically reading my post and I run into people in town sometimes who recognize me from my blog and I’m still trying to get used to that.  I would love to make more money I mean who wouldn’t right I’m working on that slowly.

 

How did you overcome them?

I’m still trying to over come some of the challenges not making money other then the products I get to review and I have slowed down on the number of products to products I know my readers will find helpful for them.  I hope the speakers conference really helps my blog take off and I am hoping that I can just keep doing what I love to do.    I keep plugging away just like I do with everything.  one thing at a time I cross off from my list as I get things accomplished.  I take the larger goals and break them down into smaller goals and that’s how I plan to figure out how to make more income with my blogging.

How did you get your first client?

I started to just do blog reviews of products I really loved from the campaign sites, I also started to network with other people and met a lady who inspires me who said here let’s make a deal 5 dollars after every book that get’s sold. So far it’s been so fun doing that project all I did was a review and showed up at the right place and the right time and a connection was made. I love those experiences the most. I also have found clients using other social media websites. The friends and connections I have been making clients because it’s all a relationship based off a friendship that develops over common bonds and that’s the kind of client I desire.

What has been your biggest lesson in entrepreneurship?

Don’t give up. How can you meet anyone to network with? You have to put yourself out there. Follow your passion and don’t ever compromise your own integrity.

So tell me are you a entrepreneur ?  What initially drew you to becoming an entrepreneur? 

Tomorrow I will be posting my day 3 blog prompt a bit late we have a U of M trip to see all of Bella’s specialist. We have and be out the door by 6:30 am. We wont be home until after 6. It’s going to be a long day. Filled with doctors questions and developing a plan for Bella of things we have to achieve.  I hope you are enjoying my answers to the feel good blogging challenge.

I’ll chat tomorrow.and maybe I will do  a Vblog about our U of M trip.

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7 day feel good blogging challenge

 

Hello everyone! It’s Amanda Ripsam

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Amanda (me) and Bella

 

This week I have started the feel good blogging challenge. 

7 blog post! That’s one every single day this week.

I will respond to Alex’s blogging prompts.   I get excited!!! when it comes to writing prompts.

 

I have been following along watching Alex Beadon youtube channel for about a year now.

(I bet she didn’t even realize it.)

 

 

I have watched some of her videos and she has some amazing tips for bloggers.

The feel good blogging challenge Alex has is something I took part in last year when I was on blogger. 

I thought why not join again and see where this challenge can take my blog now that I am on wordpress. 

Last year I joined the feel good blogging challenge but that was when I was over on my blogger blog.

Are you ready to hear my responses okay read on :) 

 

  • What makes you the expert on solving their problem with your product or service?

Feel free to interpret this question in any way you like. Maybe it’s that you’ve been in their shoes before, and know what they’re experiencing. Maybe it’s because you cater to them in a specific and unique way. Answer this question in any way you see fit :)

 I am attending a speakers conference in Grand Rapids called speak up it’s a conference where I will learn how to do some public speaking by sharing my story to help inspire other people who might be going though some of the challanges I have faced. 

 to read my story click here  http://mommiesquietplace.com/one-family-copes-with-22q/

 I wanted to really take the time to allow everyone to get to know me personally before I attend a speaking conference.

I have been blogging for two years but hiding behind my blog and just doing random post sharing post wasn’t really a way to really truly be seen and heard I have to get out of my comfort zone and put myself out there. I also am trying new things. 


Now I know what type of direction I would like to take my blog I want to share more about who I am and what my passions are. What a fun way to do so with Feel good blogging.

 

 

  • Why did you choose to focus on serving this group of people? Here are some additional questions to get you thinking: What was it that attracted you to working with these people? Is there a story behind it? What do you have in common with these people?

      I actually have first hand knowledge and experience of what life is like living with a rare genetic disorder.

    I have over come diversity and challenges that I would not wish on anyone who reads my blog and if you read my personal experience in poverty or read what challenges people with rare genetic disorders face or read my story you will learn from them that’s doctors and professionals are humans too they are not always correct they can say we all have to have this as part of our disorder when infact I don’t have many symptoms. I have whats called a partial deletion. My father and siblings have a deletion as well so does my daughter. If you want to know what 22q is read my page what is http://mommiesquietplace.com/what-is-22q-defined-by-a-adult-who-has-it/

      I have met many other adults who have the same disorder friends who I have connected with and I have helped so many parents

     The thing is no two people with this disorder is the same or has the same symptoms. That’s the beauty of DNA Genetics and environmental factors.  

      I opened up my blog two years ago and called it mommiesquietplace because with blogging it starts to feel like you are competition in the who knows more and it is never just a relaxing   conversation because the sensitive nature of this topic and how it effects everyone so different.

I just want to share my experiences in hopes others don’t feel ignored or alone when it comes to this disorder like I did when I was diagnosed over 10 years ago as a adult. I was 21. Nothing was out there support was there for parents who had children but the compassion was lacking as fear and unknown when it came to adults with this disorder we were taboo.  Until a group of parents started to pay attention and see other adults with this disorder are out there wondered if they too should be tested, wondered how to treat the adults in there life.

My passion comes from the desire to make sure no one else ever goes though what I went though after my first diagnoses of my FISH TEST turning positive for 22q.   Can you imigine how you would react or feel if you had a genetic test change your entire way of life and how others viewed you? 

Have you ever been in a online support group and found that instead of support, all it was just a place where people tried to out do one another in who knows more. Especially if they feel you are competition or if you just don’t believe what they believe to be facts or believe to be what are your own facts vs theirs.

We don’t all have to have everyone like us we were not created for everyone to like us.  As a adult with this rare genetic disorder it has been challenging to get to know the moms in the support groups because it’s always the same moms and as a mom my self with a child who also has 22q  I just don’t fit in to the groups online because while I have the disorder  so unless I explain myself to them they don’t feel like I have very much in common with them. I now can point them to my blog and they say oh you do get it. It’s been a journey but now that I’m in my 30s I have taken the past two years to work on my insides and now I am working on my outsides.

So I started my blog to form my own tribe to speak.

Or at least just to have my own personal quietplace on the internet where I can get my thoughts out with out hearing but the experts say your suppose to have this or that with this disorder you don’t have this disorder like we do or they say your suppose to have voices in your head because the experts say you will. 

I have met so many others like me who are adults with very few symptoms some with sever symptoms but all of us have this one connection a rare genetic disorder everyone is scared of because it’s unknown.

My hope with this blog is to create compassion and share stories that inspire and connect everyone together. I also like having fun at the same time and showing you glimps into what life with a rare genetic disorder is like and the challenges we face offering rewards such as giveaways or information you might not have gotten from a support group or experts. As a parent we all gather our own resources and my blog is my online resources that I share with everyone.

  • Describe your tribe In other words, describe the people you are most trying to connect with through your business and blog. These should be the same as your dream customers – the people who are most interested in buying from you, and the people you are most excited to work with.Anyone who is affected by a rare genetic disorder, It does not matter if your a mom to a child with this disorder or a adult with this disorder, together on my blog we all unite and can get along. You can have siblings or be a grandparent to a child or know a person with a rare genetic disorder. Here at Mommiesquietplace it isn’t just for moms.

You also don’t have to have 22q deletion syndrome. Just knowing that were not alone and knowing that together we are stronger when we raise or voices and speak up and out by sharing our own stories or even sharing stories of others to get knowledge that we are out there and are worth it.

My other desired readers are those who have products or services who are passionate about helping family’s.

I write reviews for company’s who are family friendly.  I enjoy promoting products and services as well as sharing stories that my readers will enjoy. I know how to stand out so let me know how I can help you stand out this isn’t just another mommy blog.

  • What’s the ONE MESSAGE that you hope these people take away from your blog?

Feel free to interpret this question in any way you like. Here are some ideas to get you thinking: What’s the ONE THING you want people to remember about your blog? How do you want your blog to impact people? Answer this question in any way you see fit :)

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  • I think my banner says it all. I am dedicated to sharing hope, compassion and balance while living with Digeorge Vcfs 22q11.2 deletion syndrome. Mommiesquietplace is the go to site for moms, dads, grandparents, siblings and adults affected by things related to rare genetics. A place to ask questions and get answers from someone with personal experience and first hand knowledge of living life with 22q and raising my own family. I also enjoy promoting products being a brand ambassador, product tester/reviewer and connecting with company’s who are family friendly,.

Keep a eye out for my next post tomorrow when I respond to prompt number 2 of the feel good challenge.

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22q and ear issues

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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 22q11.2 deletion syndrome-personal experiences

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 question from a reader and my reply.

 

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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.

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

 

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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 enoying 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.

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 mandy22q@gmail.com

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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 mandy22q@gmail.com 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. www.kdhr.net. http://kdhr.podomatic.com/entry/2015-06-12T12_31_04-07_00

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 mandy22q@gmail.com

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.

 

 

 

Aside

Don’t forget 22q at the Zoo this Sunday. I wont be able to make it this year but everyone has to go because I can’t and you must share photos on social media.

 

This is Bella’s photo from last year at Binder Park in Battle Creek

22q at the zoo

22q at the zoo

Happy Mothers Day

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Fake flowers so they don’t die. A card and dinner. Dinner was sweet potatoe poutine (a french Canadian dish) with cheese and gravy.

 

 

Happy mothers day. Sorry the picture is side ways I am uploading from my cellphone. Today I had some pain flair up and just rested in bed and took it easy. From Adam and Bella I got a card and fake flowers. The fake flowers was because the flowers they buy me always die and Bella wanted me to always have flowers around.  For dinner they made fish and poutine. Poutine is a french Canadian dish with fries cheese and gravy. They used sweet potatoes to make it healthier.

How did your mothers day go? Leave a comment below and let me know your favorite part about mothers day.

 

 

My Top 15 Favorite posts

My Top 15 Favorite post

  1. http://mommiesquietplace.com/leg-calf-and-thigh-pain-cerebral-palsy-and-22q-deletion-vs-bella-and-her-momma/
  2. http://mommiesquietplace.com/welcome-to-my-quiet-place/
  3. http://mommiesquietplace.com/what-i-have-learned-in-2-years-of-blogging/
  4. http://mommiesquietplace.com/what-challenges-do-familys-with-rare-disease-face/
  5. http://mommiesquietplace.com/quote-for-2015/
  6. http://mommiesquietplace.com/top-25-things-to-achieve-in-2015/
  7. http://mommiesquietplace.com/rare-genetic-undiagnosed-support-group-sw-mi-kalamazoo/
  8. http://mommiesquietplace.com/my-thoughts-on-blogging-and-sharing-my-thoughts-online/
  9. http://mommiesquietplace.com/our-new-car/
  10. http://mommiesquietplace.com/the-trip-to-u-of-m-where-we-picked-up-bellas-braces-and-spent-the-night-at-a-crappy-hotel/
  11. http://mommiesquietplace.com/mom-raises-child-and-both-have-22q11-2-deletion-syndrome/
  12. http://mommiesquietplace.com/questions-for-adults-with-22q11-2-deletion-syndrome/
  13. http://mommiesquietplace.com/on-living-in-toronto/
  14. http://mommiesquietplace.com/starting-speech-therapy/
  15. http://mommiesquietplace.com/one-family-copes-with-22q/

Leg, Calf, and Thigh Pain: cerebral palsy and 22q deletion vs Bella..And her momma!!!

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.

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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

 #amreading

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.

 

Reviews and life updates

I am dusting off the blog and starting back up again slowly. I have not written a update in a long time at least not a life update.

We experienced a Earth quake today see link here

http://www.cnn.com/2015/05/02/us/michigan-earthquake/

we have been busy working in our apartment organizing and cleaning and just making the apartment have a homey feeling to it.  Then the apartment rumbled today my neighbors all stepped out of their apartment and we looked at each other like what’s going on here ?

My apartment is being cleaned and organized from top to bottom and room by room. It’s going to look great when it’s done right now it’s a big overwhelming pile of piles of stuff. I am sorting out purging and we have been helping sort and organized an apartment that was my husbands uncle who passed away.  I won’t go into details online but we have managed to get a lot of things from the apartment and now we are finding places for our old stuff and the new stuff. I am cleaning the kitchen, living room, kids room our bathroom and our bedroom. I am not stopping this is something I have put off too long and now with the extra stuff it’s a now or never thing for me to learn to do and I have a hubby and kids who are in the mix and grandpa is visiting from Fl to manage the things at the apartment and take care of stuff that usually is involved with this type of thing.  So over the next little while I will not post much other then reviews of items because that’s something I enjoy doing and it’s going to help me have some down time while sorting things.

I am going to have a few blog post lined up and I just have to post them at random times and dates until things around here settle down. I will say that we don’t have any doctors visits until June and we are on a roll with Bella’s school and her health so all is good there. I am managing my health pretty ok I just got over a week of being sick and I had to rest up now I am rested up I am ready to go.

I hope you will stick around until I have something to blog about. I probably will toss in some hot topic post here and there but I need to catch up on reviews.

I hope you like the reviews and the mixture of post I have been providing.  Let me know what kind of topics you would like me to blog about and maybe I will do a reader q and a post.  Where readers can ask me questions and I provide answers. Kinda like a dear abby only It could be dear mandy?

Let me know what you think in the comments below !

 

Bella’s birth Story

Bella’s birth story

 

By Amanda Ripsam

OLYMPUS DIGITAL CAMERAOLYMPUS DIGITAL CAMERAOLYMPUS DIGITAL CAMERAIMG_20140913_164426Bella's birth story....

 

 

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.

Adamia Therapeutic Repair Lotion with Macadamia Nut Oil

<a href=”http://www.tomoson.com/?code=TOPf626b80b10f3fb0fce7370704e834626″ rel=”nofollow”><img style=”display: none” src=”http://www.tomoson.com/images/front/pixel.png” /></a>

Disclaimer: I received both items from Tomoson in exchange for a review and giveaway on my blog.   Please contact me if you have any questions.

reviewadima

I was excited to receive the lotion in the mail because not only did I get a full size bottle I received the bottle in professional packaging and size. 
I am a busy mom, so I am constantly washing my hands, switching gloves do to housework or sanitizing them for the next messy art project.  After trying this Adamia Lotion I was excited at soft  this lotion made my hands feel.  Is it water proof?  I am not sure yet.
 It comes with a pump so it is very easy to use.
The Lotion moisturizes really well and absorbs fast. This is a creamy fragrance free lotion ( I thought it reminded me of baby lotion sent but I am around kids often)
I also used it on my extremely dry cracked feet.  It works better than any of my pedicure lotions! It has a tad more oil in it then the typical lotions do but it does not make you feel like you greased up after you used the lotion the experience is something you got to try for yourself to get what I mean.
Are you wondering if this lotion is for you ? the lotion is for those of you who suffer with extremely dry skin or have cracks or sores from having your feet in those boots all winter. I have just recently been able to put my feet back into running shoes we have had a harsh winter this year in Michigan. 
This lotion I just tested is a lotion that’s going to help you and your loved ones feel great!
Do you have a loved one who in a hospital?  Do you live or work in a dry air environments? school, factory or nursing home?
or maybe you are like me who has a husband who has dry elbows and you like to attack his elbows in his sleep to let him keep wondering how his skin stays soft. (don’t judge I bet you take care of your guys too)  or do you have a child with special needs who has dry feet because of being in sweaty stinky socks all day at school ? Or perhaps a teen boy or girl who just is starting to learn how to take care of their own skin? Or what about mothers day? see my point here I am brain storming of everyone I can think of who could use the benefits of this awesome lotion.
Why would I keep something this great to myself ? because in just one use I noticed a different in my feet. My feet were so dry and craked too bad to even show you before and after photos but trust me on this when I say my feet needed some tlc. This lotion helped and I have been using it every day on my feet my hands and my arms even on my skin with my fair skin (I have a sensitive face when it comes to lotions). I am happy to say that I found a lotion finally that I don’t break out with, has no odor and isn’t too greasy. While it says it’s not greasy it does have some greasy feelings afterwords but I think that’s just the oils because it’s not overly oily.  It’s something you’ll have to try to get what I am trying to explain here.
I also use the lotion on Bella now her dry legs and feet from her having cebreal palsy and being in leg braces so often helps her legs not feel as tight because I can rub out her knots behind her knees a lot better with lotion then with out and her sensitive skin does not react to this either. Where can I sign up to get huge discount on a years supply ?
adamia

Therapeutic repair lotion Hurting skin restored with macadamia oil.

Quiets irritated and distressed skin.

Ingredients
Water, Macadamia Integrifolia Seed Oil, Glyceryl Stearate, Cetearyl Alcohol, Dimethicone, Hydrogenated Macadamia Seed Oil, PEG-20 Stearate, Phenoxyethanol (and) Ethylhexylglycerin, Tocopheryl Acetate, Allantoin, Potassium Cetyl Phosphate, Sodium Polyacrylate, Xanthan Gum, Potassium Sorbate, Aloe Barbadensis Leaf Juice, Citric Acid, Titanium Dioxide (and) Silver Chloride

Directions
Liberally apply Therapeutic Repair Lotion with macadamia oil featuring Promega-7 to distressed skin. Reapply throughout the day as needed to soothe itching, burning and redness. Suitable for total body use.

I will not show you my feet but here’s a photo of my hand.

soft hands review  lotion  tomoson

soft hands
review
lotion
Tomoson

It is Dermatologist tested.
Clinically proven to improve damaged skin.
Its Non-Greasy. Odor-less even though I say it has a slight baby lotion smell to it. Maybe I hang around kids to often.
It claims it will not even stain clothing or fabrics so far so good.
Huge bottle 16.9 Oz and a nice size box and it comes with free bubble wrap. ok that’s just a bonus for me because I can give Bella bubble wrap to play with for two seconds while I type up this post and who doesn’t like products shipped in bubble wrap?
Product Description what the company would like you to know:
Adamia Therapeutic Repair Lotion has been utilized effectively for years in healthcare facilities in Australia.   For those who suffer the daily, unrelenting pain of dry, red, cracked, distressed skin proven relief is finally here.  This proven product, tested in healthcare facilities, has harnessed the natural healing powers only found in the oil of the macadamia nut.  This natural ingredient mimics the oils found in human skin and naturally replenishes essential oils to distressed skin, penetrating hurting skin to repair, restore, and renew it.

Shown in two separate trials in healthcare facilities to improve the quality of distressed skin, this therapeutic lotion even showed a significant incident rate reduction in skin tears among long-term care residents.

Adamia Therapeutic Repair Lotion is dermatologist tested, fragrance and dye free, tested non-allergenic and safe for sensitive skin, absorbs quickly and will not stain clothing or linens.

I received adamia lotion in the mail for free in exchange for this product review.

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Happy Birthday Bella. 8 years old.

Pictures from Bella’s birth and her most recent picture in no particular order.

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The weekend before I went into labor

Me in labor

Me in labor.

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Checking Bella’s heart. Bella had extra blood pumping in her lower left chamber during a 4D ultra sound but resolved on it’s own when she was born.

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and we meet for the first time. I had lost a lot of blood that caused a lot of complications but I pulled though.

Bella brothers and sister waiting to meet their new sister.

Bella brothers and sister waiting to meet their new sister.

Hubby and I proud parents

Hubby and I proud parents

nice

This is us now. Man where have all the years gone?

137

This is Bella now. My how much she has grown up.

 

The winner for the army tank clogs and goggles is…

 

The winner to the army tank clogs and the swim goggles is Reichal Winn thank you for entering both giveaways and following giveaway rules.

It has been fun getting to know you.

I cant wait to see when you get them.

Also thank you for following my blog.

I appreciate it.

In-case you forgotten what they looked like here are some photos.

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

-Toddler-adorable-tank-clogs-review+giveaway

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Disclaimer: I received both items from Tomoson in exchange for a review and giveaway on my blog.  I am not responsible for shipping. Please contact me if you have any questions.

 

What I have learned in 2 years of blogging.

Hello everyone,

 

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It’s Amanda here. I am so finally relieved that I worked out the kinks to my blog.

I have been teaching myself how to blog for the past two years. Getting my content up on Blogger, writing post and then decided to get a domain. I thought all was good but oh what a newbie blogger I was.  That was a year ago.

I learned from some very nice and smart bloggers that wordpress was the way to go in where I wanted to have my blog go. 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 because they got frustrated with so many changes and then I get webhosting and just decided to really take this blogging into full force while managing my blog design and layout and all the fun stuff that goes into blogging 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. Then I did and it looked good. I took the categories and made blog post and reviews. So much simpler to navigate my blog and it’s more user friendly that way. It’s more Amanda friendly this way too.

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. I should have picked webhosting so much earlier but I had to do things the hard way.

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.

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.

you can find the giveways in the review tab up top of my blog. I picked my first winner for army tank clogs and I can’t wait to see who wins the swim goggles.

I am thankful to each person who views my blog and I look forward to reading all of your comments.

 

 

Motivate your child action plan-a review

<a href=”http://www.tomoson.com/?code=TOP42e68597522cf82199c64fa2dd528445″ rel=”nofollow”><img style=”display: none” src=”http://www.tomoson.com/images/front/pixel.png” /></a>Disclaimer:I received this book in the mail in exchange for a honest view of what I thought of the book.

 

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. www.biblicalparenting.org/actionplanaudio.asp. 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

resize_a135ec91d8ca4250f1bc4e62ef6ea1e06e9dc71a338b8da83c023fe0fb6aaa7b2decb795128128

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
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I am giving this book a 5 out of 5 stars because I really enjoy work books and audio books.<a href=”http://www.tomoson.com/?code=BOTTOM42e68597522cf82199c64fa2dd528445″ rel=”nofollow”><img style=”display: none” src=”http://www.tomoson.com/images/front/pixel.png” /></a>

 

 

Managing health care for adults with 22q11.2 deletion syndrome.

 

Life update on my health and all of the exciting things happening here.

A rambling blog post of sorts…

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

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

I have seen my doctor and I have to work on the gasteroparies diet following better because my health issues are not operable I basically am on my own to deal with it all. I have to eat the gasteroparies diet and if you ever seen what it looks like you can understand why I will refuse to attend potlucks and anything with a social event that resolves around food as the main function. I simply have no will power at the moment if I am home I am doing well when I go out all bets are off and I think diet what diet ? I lack will power when it comes to taking care of myself and setting my own limits and I am too harsh on my self which have been pointed out to me by so many of those closest to me and I appreciate everyone concern I am just trying to get though the day some times it takes  a lot just to fake not looking sick.

I have to work  at loosing 40 pounds. I gained additional 12 pounds since I started the gasteropaires diet which is not uncommon for people with gasteroparies it’s just a emotional toll because I am doing what I should be for the most part but then there are moments where I get defeated with not seeing results and I just want to call it quits and eat a burger or chocolate bars and fancy coffee drinks. I stick to one or two cups a day now and none of the extra stuff.  I need coffee to help keep my sanity almost as much as I need my quiet time.

I have been doing product reviews and I am hoping you guys like to see those. I have also been not really into my blog as much lately because I have been busy with my life when I get home I just want to crash and fall asleep. I have to work on finding that balance.   I snack at night and I have not done much exercising like I used to. Confessing to everyone pretty much I have been a slob and lazy. I need to get back into working out again. The snow is finally all gone so I have no excuse I even can work out here at home I just have to manage my time better.

I have a pair of swim goggles and tank clogs. Two very cool products from Tomoson I received to review those reviews are now up. I have received a lot of ebooks and other products from  Tomoson. I am also a member of Influenster over all it’s been a good mail call month. I know some of you read my blog to check out some of the cool things I get while now you can see first hand on my youtube account.  Having a fun hobbie like my blog and doing product reviews and bloging about health issues we face and helping support other people who are affected by this disorder is the reason behind this blog. writing get’s me excited because I enjoy seeing all of the page views and that people out there are actually reading my blog from all over the world. I have had someone from Alaska even message me. I have enjoyed meeting new friends and people just by blogging. Sure having my husband and friends as a supportive outlet is great but there is something about helping strangers and receiving help in return feeling valued and voicing my opinions and being heard is a nice change from my time I have spent trying to fit into the clicks that are part of online support groups not that those people are bad they truly are wonderful strong people but blogging allows me to just put things out there and know when I see a page view jump someone has heard what I have to say.  Finally realizing that my message is out there Adults are fully able to live life with this rare genetic disorder and have family’s of their own. ( hint we can also wipe our butts ) too far but you would be surprise at the silly questions I have read in groups. I have had to pull out of groups because those questions create a stir in my spirit that makes me want to tell these people to jump in a lake and cool down and just allow life to happen. I don’t I keep to myself a lot lately you will only hear my thoughts on this blog.

I have met so many other people who have amazing family’s of their own or are just starting out with there own little family’s and call many people with 22q my brothers and sister yes I have some siblings of my own who also have this disorder but I think you get what I meant here. A meeting of the minds is a wonderful thing.  I am rambling it’s more just a ramble for me then it is for you but if you agree you can let me know in the comments below.

Another thing I am excited about is in just a few more months then school is out for summer. I don’t know about you but I can’t say that line with out that song playing in my head. *schools out for summer* ha now it’s in your head too.

I am so excited for summer and the warmer weather. I dream of going to the beach, spending time at the pool and enjoying time with friends and family.

This winter was a long and harsh winter, now that spring is finally here mother nature has been off her meds and a lot of rain has been happening yes our sinus are flaring up and Bella missed school today but going tomorrow because over the weekend she had some sinus issues and some leg pains once again crying at 4 am. Backfen has been a blessing for Bella cebreal palsy symptoms so has her leg braces but there are just some days when the temp goes up and down that causes pain flair ups and not much other then riding it out will help.  That was just one day it used to be days or weeks at a time.  I am not a stranger for lack of sleep.

There were a few days where we got to wear shorts ah the good days of spring break. I was shocked that spring break was so nice it’s usually raining a lot.    What is the weather like where you live ?  Bella wants to know where we can go and fly kites since she made one the wind and weather have not been listening to her wishes very well it’s been windy and raining or warm and sunny. Come one just a day of strong wind please!!   And a day with out pain would be good.

April has been a very slow blogging month but don’t fret I am planning on sharing Bella’s birth story on her birthday for everyone who has asked about what life was like having 22q as a adult and then giving birth to a child who also has 22q.

I am excited to soon announce the winner of the giveaways. That was so much fun!

I got to do my first giveaway and learning how to do the giveaways was so easy. I should have done giveaways sooner. Even if not many of you entered. I guess not many of you wanted to have a pair of cool tank clogs or swim goggles. I know who you are.  It’s ok were all good.

I didn’t promote the blog at all and I actually had people find my blog I was so excited to see those entry’s with out much work.  I am looking forward to doing more giveaways for you guys, having more product reviews and also sharing our life with you guys.

I just hope you can know that no news around here. Life has doing it’s usually roller-coaster and I have been having some moments of being overwhelmed but good news things have been going well other then Bella lost her eye glasses at the park but with Bella’s insurance we had two replacements and we have a rush order from the place we get Bella’s eye glasses.  We should hear from the eye glass place Friday.

Speaking of eyes I have the first stages of cataracts yep another diagnoses for me. I swear since I turned 30 (I am 32 now) I have been falling apart. piece by piece body part by body part I have been getting one diagnoses after another.

Bella and I  don’t have a U of M trip until June  when we see the crainofacial team and it is going to be one of those all day trips. I am taking a break from the doctors visits until June because Bella’s health has been stable minus back  before spring break.  Bella had a spell at school and two temps and sinus infection with inner ear infection. Darn those 22q ears. I will have to do a blog post about my own experience with my ears ears are important to have. Bella hears just fine she passed hearing test with flying colors, her hole in her ear healed up and we are not going to need tubes so I’m on the fence about her needing tubes we still have to see if she continues to improve it’s not off the table yet but it’s not on the table either.  Bella needs to work on the listening part.

Health wise I am the one who health needs to be focused on but I am managing the best I can with what support and resources I have. Today I saw the doctor and got scripts transferred and delt with some of the problems of managing my health is the cost of lack of insurance. Long story and not qualifying for anything other then emergency Medicaid. I have found ways to lower medical cost and that too will be a blog post I often get asked about how I mange that side of things and I am going to wait until my brain fog goes away and I can actually type it all out for you guys in steps.

My doctor wants me to write up what symptoms my siblings have and compare them to what I have and I think that will benefit you guys as well to see a list like that so I will do that for everyone to see how vastly different each person with this disorder has this syndrome.  It’s kinda hard to do when your father disowns you and keeps you cut off from the family because of his self important entitlement he thinks he has when it comes to his children he acts like he owns them. I know when my siblings are out on their own I will hear from them.  Until then I have to keep my distance to keep myself whole and not endure my fathers verbal and mental abuse.  An example is he pretends to be my siblings online and then when I do a test to make sure it’s him or not he usually messes himself up by how he types and what he says.   I don’t have any knowledge about my siblings any further then when I stopped being their unpaid baby sitter and moved into my grandparents place. My grandparents are the ones who raised me neither of my parents where around unless it was convenient for them. They had me in a hospital Nicu when I was born but do you think either of them knew what was wrong with me back then. I will never know other then I had seizures when I was younger what was wrong with me. I know part of it now that I have been diagnosed with 22q11.2 but new born screening didn’t do genetic Fish test a test that I had to determine if I had 22q11.2

At 32 I often wonder what health issues comes along for adults but that’s a blog post for another day.  It will probably be one of those blogs where I vent or rant.

 

I hope you have been having fun reading about the products I get in the mail I have been finding it fun to share the goodies with you guys.

I am glad to say that is really the only news to report other wise it’s just typical day to day experiences around here. April is a big birthday month step daughter had her birthday last week, step son has his birthday this week then next week is Bella’s birthday.

Grandpa is here visiting from fl were going though a lot of stuff and spending some family bonding time sorting out things and cleaning up a apartment Adam’s uncle passed away and our family has had been dealing with that in the mix of things but handling it all very well with a few minor bumps along the way.

 

I would love to hear about all the fun and exciting thing you guys have going on, comment below and I will always reply asap.

Thank you everyone for all of your support and being so kind while I take care of myself and my family.

 

 

 

 

 

 

Influenster-review-carefree-acti-fresh-liners

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

   Carefree-acti-fresh-liners

 

 

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

me

#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.