Photo Challenge Day 2. Incomplete

Photo Challenge Day 2. Incomplete.
Photo Challenge  Day 2. Incomplete.

 

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

 

1. Something beginning with N

 

Today’s photo of the day challenge is

1.something beginning with N

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My new profile photo

My new hair color is red :) yes again!

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

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

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

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

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

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

here is my before

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

what do you think is red my color ?

 

August Photo A Day Challenge

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

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

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

 

 

 

 

 

Book Review: Waiting For Heaven

Hello everyone.

I met an amazing author during the speak up conference.

 

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

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

 

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

 

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

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

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

 

Book Review
Picture

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

Waiting for Heaven
Finding Beauty in the Pain and the Struggle

by Heather Gillis

Life can sometimes lead us to unexpected places, to only leave us broken, desperate, and hurting. Heather Gillis and her husband, Mac, waited in anticipation for the birth of their third child. Like many Christian couples, their dreams and expectations in marriage, parenthood, and daily life developed differently than they’d planned, and left them grieving a life that would never be.

Their journey gives insight into a “new normal” and uncovers the stepping stones of the healing process. In their process, they re-discovered God’s abounding love through their experiences of joy, heartbreak, and purpose.

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

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

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

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


Picture Heather Gillis

About the Author

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

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

https://www.youtube.com/watch?v=YDnhZQRzqMA 

 

Amanda Ripsam Review

 

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

 

Other places you can find Heathers Gills book

http://www.goodreads.com/book/show/21809735-waiting-for-heaven

http://www.amazon.com/Waiting-Heaven-Finding-Beauty-Struggle/dp/1490827862

 

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

Please check out

http://www.bowenshope.com

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

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

 

Thank you so much for reading

Top 10 Tips On How To Survive Multiple Doctor Appointments

Hello everyone,

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

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

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

Top 10 Tips On How To Survive Multiple Doctor Appointments

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

 

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

 

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

 

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

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

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

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

How do I manage all of this ?

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

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

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

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

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

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

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

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

(really working on this one can you tell)

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

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

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

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

VCFS Awareness Day is on Friday August 28

 VCFS Awareness Day is on Friday August 28

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

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

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

I will be wearing Pink and blue will you?

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

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

If you want to know what Vcfs 22q Digeorge syndrome is please read my blog post here > http://mommiesquietplace.com/what-is-22q-defined-by-a-adult-who-has-it/

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

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

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

I had so many people ask how did it go?

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

 

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

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

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

 

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

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

Back to the story I shared.

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

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

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

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

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

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

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

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

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

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

I do… I think.

That matter is spirit.

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

The passage reads we are fearfully made!

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

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

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

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

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

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

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

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

That was the easy part.

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

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

 

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

We are fearfully and wonderfully made.

 

 

#Teamsnuggle I got a snuggle bear in the mail.

#Teamsnuggle #review #snugglebear Den

Welcome to the Snuggle bear Den community

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

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

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

 

 

Need a invite go a head and click this link here ->   http://h3.sml360.com/-/1yg7

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

The Bear Den

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

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

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

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

Are you part of the snuggle den yet?

-> http://h3.sml360.com/-/1yg7  just copy paste and sign up and your in it’s that easy. I have a snuggle bear badge on my blog just because he’s so cute.

Have a good night everyone.

 

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

Hello everyone,

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

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

Grand Rapids, Michigan.

www.speakupconference.com 

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

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

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

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

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

This way I can go and relax and have fun.

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

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

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

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

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

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

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

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

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

Leave a comment and let me know.

signature_zps3190df48

 

 

How does DiGeorge Vcfs 22q11.2 deletion syndrome effects me?

 

 

Hello everyone,

I have had a question from a reader for me

The question was: How does my disorder effect me?

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

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

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


The other way it effects us both is we have hypocalciuma which basically means we both can get to a low calcium number. If that happens we pass out or start turning blue and having seizures. I haven’t had any since I was pregnant with Bella. My pregnancy with Bella as you can imigine was very high risk and yes I did know I had the disorder before I had Bella.
I have had some passing out spells. My ear drum collapsed when I was 12 years old and I had to have tubes in my ears every year until I could have the adult tubes in which was put in when I was 19 years old. I’m 32 and other then mild clicking sounds I don’t have any ear issues that need surgery.
My daughter had tubes put in her ears at 2 years old to help with some drainage. My daughter also has a mild form of cerebral palsy. Bella wears leg braces and I do not have cerebral palsy.
The disorder Bella and I have effects us both differently. I always have a challenge when it comes to answering this one. I mean there are the basics we have in common we both look younger for our age that could be do to the VCFS part of the disorder and then we both have a history of hypocalciuma ( low calcium levels that if dropped very low can cause seizures) that could be do to the DiGeorge syndrome aspect of it. Then there are some issues with Adhd for both Bella and I. Bella has Ot, Pt, Speech, and therapy to help address some social issues at school as well as Adhd both physical and emotional with sensory processing disorders. 

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

I hope that helps so many people have asked me how it effects me and I just have a hard time describing this issue because symptoms flair up I treat the symptoms and try to move on the best I can before the next flair up happens.

I am so thankful for everyone who has asked this question to me and I am glad I finally am able to get this on my blog.

Do you have any more questions for me?

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Mail call: Good Buddy Notes-Shelley Dieterichs review

Hello everyone, It has been a while since I did some product reviews. I have had so much fun working on the blog challenge and gearing up for the speakers conference I am attending. That I didn’t even try to get product to review at all this summer until a lady I met on LinkedIn asked if I could do a product review for her in exchange for a free product.  How can I say no she asked me so nicely.  Shelly also has a wonderful personality.

Let me introduce you to a lady I met on LinkedIn.

Her name

Shelley Dieterichs

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

See her blog link here.

http://www.goodbuddynotes.com/blog/a-little-bit-about-me/      

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

Check out her adorable letter stationary, personalized kids and pet products here  http://www.goodbuddynotes.com/  

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

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

 

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

 

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

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

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

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

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

So what did Bella end up getting ?

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

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

The kid cracks me up some days.

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

The card was very cute too.

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

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

Over all a 5 out of 5

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

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

 

What do you think of the Dress Bella received?

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

 

 

 

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Feel good blogging challenge day 7 which is all about spotlighting a customer!

The prompt for day 7 was to spot light a customer.

A first I thought but I haven’t had any customers.

In my mind that was meaning exchanges of money. Considering I haven’t made any money with my blog.

I have had lot’s of parents call me, message me on Facebook or here on my blog to ask questions and I was able to help answer them from my own personal first hand experience of living life with 22q11.2 deletion syndrome DiGeorge syndrome VCFS.  I even help promote a rare genetic book and receive 5 dollars per book sale.  I thought at first spotlighting that but I have all ready. http://mommiesquietplace.com/book-review-missing-genetic-pieces-by-sherry-baker-gomez-and-illustrated-by-kas-winters-a-review-by-amanda-ripsam/
every time one of sheery’s books get sold I make a bit of money.  I think of that as a friendship not really a client or customer.

I help mentor other parents who have children with rare genetic disorders with the local support group we have help there was one lady who wanted to know what she needed to do to get her son tested for 22q11.2 deletion and I was so excited to help her.  Again not a client or customer but someone who I became friends with. Nothing was exchanged for my services to offer help. I am not in it for the money. I am not a organization that’s out to educate people to make a few bucks doing so by promoting seminars. I’m not an awareness blog that helps and earns a  donated dollars to buy new fancy things.

I make nothing from my blog fiancially.

Helping others is my passion.

By sharing what my life experience have been living with this disorder and sharing my story to one person at a time.

My hope is to develop a biography book some day. Maybe then I’d secure a retirement vacation fund.  For now I am just developing myself learning as I go and sharing my story of hope and trying my best to spread compassion to something so feared and unknown.

However making an income is not my goal and I think that makes me stand out from the crowd because I am honestly just trying to make sure that when someone (anyone) age isn’t a factor adults,children or teen is diagnosed with this disorder they don’t feel alone and isolated like I did.

10 years ago when I was looking for information on adults with this disorder foundations only mentioned children and to this day still only know about how it effects children.   My hope is not for awareness to get out there but for understanding and compassion.

I also get to do product reviews on my blog so I am going to spot light some of the campaigns I have gotten to try/test/review in exchange for full size products and I love reviewing products that fit into the lifestyle health and wellness areas.

My readers have loved when I do mail calls. Lately I have gotten into giveaways to reward my loyal readers and it has been a nice break from the post about the health topics I blog about. I enjoy doing product reviews as a hobby and photography is another hobbies. With my background in customer service and sales and hair I figured a blog is just the right fit to share some of the products I love.

 

Here is a list of some of the company’s and services I have worked with

BZZAGENT CAMPAIGNS:

 

Redbox Instant by Verizon 2012 December 20, 2012 February 14, 2013
Neutrogena Norwegian Formula Hand Cream December 13, 2012 February 7, 2013
Bzz For A Cause December 12, 2012 December 31, 2012
Post Alpha-Bits December 4, 2012 January 29, 2013
Afrin(R) Stick Up for Yourself(TM) November 8, 2012 January 8, 2013
Meijer Mounted Photos November 1, 2012 December 27, 2012
Burt’s Bees(R) Intense Hydration October 10, 2012 December 5, 2012
UNREAL(TM) Candy July 30, 2012 October 4, 2012
Quaker Popped January 15, 2015 March 26, 2015
NESTLE(R) TOLL HOUSE(R) DELIGHTFULLS(TM) October 6, 2014 December 15, 2014
Copper Sole October 1, 2014 December 24, 2014
Ristorante by Dr. Oetker August 11, 2014 October 20, 2014
LITTLEST PET SHOP July 17, 2014 September 24, 2014
Paula’s Choice CLEAR Acne Kit May 7, 2014 July 16, 2014
Halloween TruMoo(R) September 10, 2013 November 1, 2013
HORMEL(R) REV(R) wraps August 20, 2013 October 29, 2013
MidNite Sleep Aid June 5, 2013 August 14, 2013
Dr. Scholl’s(R) Massaging Gel(R) Insoles May 13, 2013 July 8, 2013
Got2b POWDER’ful April 3, 2013 May 29, 2013
Children’s Claritin(R) March 11, 2013 May 23, 2013
Glade Expressions(R) Collection January 16, 2013 March 12, 2013
Claritin-D(R) January 3, 2013 February 28, 2013
Morningstar Farms December 28, 2012 March 13, 2013

My favorite out of this list was Littlest Pet Shop. Bella was so excited that she was able to get a huge Littlest Pet Shop play set with some littlest pet shop friends to play with that is the type of campaigns  I have been keeping my eyes out for every since.

Just look at the big grin she has any campaign that will put a smile on Bella’s face is one I am sure to sign up for.

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Holiday VoxBox ’12

Ivory® 2-IN-1 Hair & Body Wash

Ivory® 2-IN-1 Hair & Body Wash


Sunkissed VoxBox

Suave® Family

T.L.C. VoxBox


Breyers® Gelato Indulgences™

Ivory

Puffs®

 


Surf’s Up VoxBox

P&Geveryday™ VirtualVox

eBay

SinfulColors

Penguins of Madagascar

resource® Natural Spring Water

Colgate® Optic White® VirtualVox

Moda VoxBox

Puffs

Hair Food

Swiss Miss

BlogSTAR VirtualVox

Influenster Bowl

Rock the Lunchbox

JERGENS® BB Body® Collection

Carefree

Healthy Essentials®

Hawaiian Tropic®

Rimmel London
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My customers are company’s that want product reviews.

People who just want some help from someone with first hand personal experience living life with a rare genetic disorder are also my customers and I love being able to share with them the products and services I find helpful.

I could share some people who I guess were customers but they didn’t have to pay for me to be mentors or friends with them.

I just enjoy helping people and if I can help with promoting products or educating people on how to mange life with rare genetics then that’s what makes my day.

Do you have any customers who stand out in your mind?

I would love to hear about them share about your favorite client or customer in the comments below!

 

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Feel good blog challenge day 6- A personal Post

Blog Challenge #6: A Personal Post

Write a blog post sharing
the following:

  • 1

    Write about something that lets people get to know you better.

    Write about something that lets people get to know you better. This could be an important story that defines you, it could be a collage of your recent Instagram posts that lets people into your daily life, or maybe even a blog post introducing people to your dog 😉

    Hello everyone, I’m sorry for having the blog post published a few days later we had a trip to the U of M this week and I had joined Jazzercize in the mix of all of this so on my recovery days after a workout has been to spend time extra time with Bella and catching up on cleaning and spending time with the hubby.I also had a few friends stop by I always love catching up with visiting friends who visit.

 

On day 6 of the feel good blog challenge and I have to write about something personal that allows my readers to get to know me better.

 

 

How much more personal can I get?  I all ready share about the rare genetic disorder I have. 

 

I am going to share today the reason why I am so passionate about helping others!

 

Here is a important story that defines me http://mommiesquietplace.com/one-family-copes-with-22q/  wait I need to have that say defines my blog not who I am. Who I am is not my disorder but I do blog about it and my personal first hand experience. It’s the story that got me accepted into a speakers conference that I will be attending this month July 23-25 in Grand Rapids, Mi.

The other day I shared about something of service which was a personal thing that my hubby and I are part of we are board members for a non profit and do volunteer work and are parent mentors.

http://mommiesquietplace.com/feel-good-blogging-challenge-day-5-be-of-service/

Here is a story about my experience in poverty in hopes of helping others who are in poverty. I attended the temple in Missouri. I wrote a blog post afterwords sharing my personal experience on the trip.

I also gave a detailed experience of my personal experience of what life is like living in poverty one of the many reasons why helping others is a passion of mine.

http://mommiesquietplace.com/a-vacation-and-a-lesson-in-poverty/

The next really personal blog post was writing about challenges family’s face living with a rare genetic disorder. The post I wrote after attending a rare genetics day event in Lansing Michigan at the capital builden.

http://mommiesquietplace.com/what-challenges-do-familys-with-rare-disease-face/

 

I’m also using Alex’s suggestions which was share Instagram posts or introduce us to your dog.

We don’t own a dog or even a cat but we do have gold fish

Goldfish new tank
Goldfish new tank

 

https://instagram.com/amandaripsam/ 

Share your Instagram account was another suggestion.  While you are checking out my Instagram account follow me! I always follow back.

The only other personal experience I haven’t shared is about my weight loss journey. I’m working on loosing 45 pounds. I have been told by the doctors to get the weight off the massive hitial hernia that I have I must loose 40 pounds. I have not been successful at walking and eating right alone. Infact I gained two pounds so I’m working out three days a week doing Jazzercize. I have been a part of it for a week now and I feel a lot better on the days I do attend vs when I don’t like today. Today I think my body just needed the much needed sleep so I caught up on sleep and hubby took care of things for me so I could rest up.

Now I have  slept I’m working on catching up on my blogging stuff.  I am even getting rid of webhosting for my blog. I want to save money and since my blog isn’t about making money it’s about sharing my story and product reviews. I’m moving my blog over to webly don’t worry the domain will be the same. I can mask my domain over to webly very simply. I do love the domain name and I plan on keeping it. www.mommiesquietplace.com has been around for just a little over two years.  I just don’t want to deal with the cost of webhosting any more.  My membership to Jazzercize is much more important for my personal growth, health and pocket book.

Is there anything you want to know about me that’s personal?

 

I hope you enjoyed following along with this challenge.

Stick around for the last day which is day 7

 

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Feel good blogging challenge Day 5-Be of service

Blog Challenge #5: Be of Service

 

 

Write a blog post sharing
the following: prompt

  • 1

    Share something of MAJOR VALUE with your ideal customers.

    Maybe you found a really great website that your audience would like. Maybe you found an amazing tool or software that they’d enjoy. Or maybe you just have a quote that would inspire them that day.

     

     

    Hello everyone,

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

    The link here is a list of the services they offer. http://www.p2pswmi.org/projects/

    Here is a link of the resources that parent to parent shares http://www.p2pswmi.org/resource-directory/

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

     

    Adam and I are one of a few people who on the board for Parent to Parent, check out the other people here. http://www.p2pswmi.org/board-of-directors/   notice the name’s Ripsam and that my website is listed under where my name is

     

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

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

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

     

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

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

    Parent to Parent does.

     

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

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

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

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

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

    fhttp://www.p2pswmi.org/ 

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

     

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

     

    I hope you found today’s post helpful.

     

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

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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:

  • 1

    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.

  • 2

    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.

 

  • 1

    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.

     

  • 2

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

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

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

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

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

    Digeorge syndrome

    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.