shoe inserts called Chipmuncks?

Hello everyone

Bella wanted to share that she been wearing her Inserts for a while now and they are Chickmuncks. They look like they are apart of her shoe and no one needs to know she is wearing them.

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Afo Chickmuncks Bella's insert .jpg

Bella had to break them in for the first few days but she is doing amazing and the inserts are helping her walk better. Bella insert help her with her running wearing her inserts has helped with her running as there is less impact when she lands on her feet the inserts absorb the sock form the feet hitting the ground when she runs.  I have noticed how proud and tall she is walking around in them a big change over something so tiny I guess that's why they call them chickmuncks. As you can see from the picture when the inserts are in you can not notice a thing different about Bella or her shoes.

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Children's special health covers one pair but the cost for these are inexpensive  I found a pair online here   https://cascadedafo.com/products/chipmunk

 

 

 

The shoes we buy for Bella we get at a place locally called little chicks that link is here.

https://www.facebook.com/LittleChickShoeShopInc/ here is their Facebook page I was not able to find their website.

Bella needs a high arch shoe and the New balance line is perfect for her feet issues. Since we invested in a great pair of shoes and the inserts there has been a lot less ankle feet pain. The Physical therapist we took Bella too a few years ago suggested that we shop at little chicks and now we never buy her shoes any where else.

The price is a bit more then what we would pay for a 10 year olds shoes because she out grows them so fast but the store gives a year warrenty on wear and tear I love their customer service small store so they provide a lot of one on one they are there to help pick out the perfect pair of shoes for your child in your budget. New balance are a bit higher end in the price range but a quality shoe makes all the difference. I buy two pairs of shoes for her at a time. They even put in regular inserts but because Bella now has these Afo inserts we dont need to use the older pair. When Bella was younger Bella had to wear leg braces and over time she has grown has done a ton of Ot and Pt and is doing so much better with treatment than with out treatment. The only problem is we have to miss school one day a week in order to attend these  visits for treatment. It has been a struggle staying on top of home work but we have manage to do okay and in the end her physical health has been improving. Bella still has some leg pains but over time and as we continue to do Ot and Pt things are working out for Bella really well with backflen being a huge help for night time leg pains Bella used to wake up crying and screaming in pain. Sometimes she still does but with some lotion and rubbing the knots out has helped. Bella wanted to do a video for you guys of us working the knots out but I don't know how well I can hold a camera and rub her knots in her legs out.

I wanted to share because leg pains and 22q is common among some of the kids I mentor and and a few parents online have wanted to know what we do for Bella and her leg pains. Bella leg pains are caused from a mild form of Cp you can learn about cp here on this website.

http://yourcpf.org/

Bella has a mild form of spastic cp that effects her lower legs.

on top of the cp she has 22q11.2 deletion syndrome. DiGeorge syndrome and a few other health issues that go along with having a piece of genetic material missing

to learn what 22q is check out the 22q foundation webpage were we have been featured on a few dozen times.

http://22qfamilyfoundation.org/

We are always willing to talk open about any issues and answer any questions you may have.

Thank you for reading and letting Bella share the inserts she has she has a desire to help other kids like I do who have 22q together we are getting the word out one page view at a time

until next time friends be kind to each other always

 

 

Isabella story is on 22q family foundation website

 A post that was shared on the 22q family foundation website years ago. This blog is a continuation of that story.

I have a father, three siblings, myself and my daughter who all have 22q deletion VCFS digeorge syndrome.

Testing of not only the child but of both parents is very important in getting the help you need to take care of you and your child with 22q. Here is my story.

I’m Amanda Ripsam. I have VCFS 22q digeorge syndrome. As mentioned above, my father my three half paternal siblings as well as my 4 year old we all have 22q. I did not get diagnosed until I was 21 years old.

My brother was the first of us to get diagnosed after he had his first seizure which happen after we ate turkey one Christmas Night. He was treated for hyoocalciuma and low iron levels. He is developmentally behind and had a learning delay as well as a speech delay. My sister is more developmentally behind then my brother and she also has a speech delay hypocalciuma seizures and low iron levels. They were given reccaltrio and calcitro for the calcium issues. Sadly I lost my 6 year old brother to a seizure; he died in his sleep while having a seizure. He hemorrhaged in his brain and that caused him to die.

I am 29 years old and my birthday is Feb. 10, 1983. I was born in Toronto, Ontario Canada. I moved to Grand Rapids, Michigan when I was 21 years old. I got diagnosed at 21 in Canada because the test at the time and the treatment and such would cost around $5,000, which I didn’t have so I went back to Canada to get tested and treatment. My ear drum collapsed when I was 11 years old so they put tubes in my ears every year to help correct the issue I remember getting speech help when I was in school that was with out knowing I had 22q.

I got pregnant when I was 24. I also got married and I’m a step mom to three kids. I did have a complicated high risk pregnancy. I refused an amino test as I knew I could have my kid and get a fish test. I wasn’t planning on aborting my child healthy or unhealthy. I always was sick during my pregnancy. I don’t think there was a day I didn’t throw up. I started to pass out and they put me on bed rest.

I had developed the hypocalciuma as my daughter was pulling the calcium from me and no matter how much calcium supplements I was given to take or milk to drink it wasn’t enough. My levels stayed at three during my pregnancy; my iron levels were also around six. I couldn’t afford the medications to treat so bed rest it was. I had a lot of embrotic fluid I started out being 135 pounds and my last weigh in for pregnancy was 198 pounds. I’m only 5’2.” You can imagine the leg pains and the back pains I had. I gave birth to a beautiful 7 pound, 5 ounce baby girl. She started to turn blue and had tremors in the hospital. I urged the doctors to do a fish test. They wanted to wait a week. I was against the waiting; I said it needs to be done now. They tested her and, sure enough, she has 22q deletion she had hypocalciuma feeding issues. We ended up having to thicken formula with rice to the consistency of honey. We did a swallow study and I couldn’t breast feed her because she would puke it up threw her nose. I did pump my milk into her formula to mix it with the formula and the rice to add more nutrients.

She has had speech delays, hypernasle is 80 percent and she has low muscle tone in her palate in her upper mouth so we have to send to a palate specialist which we are waiting for the first appointment. We also have her in speech therapy. her articulation has improved she also has had tubes in her ears. They just took them out with a paper patch and she’s doing great. she has had two cavities and gotten two fillings done. The doctor just put her on clairtion for her allergies and that’s helped with the runny noses and the dark circles under her eyes are starting to fade.

She has sever constipation issues. We have her on maralax one cap full and one teaspoon full a day. She has sleep issues so we give her melatonin at night. She is also on a b6 complex because of her irritability and behavior issues. She will be happy one minute and in a tantrum that’s uncontrollable the next. she is also in preschool 5 days a week from 9-12. she is starting physical therapy for severe leg pains. She has had a number of seizures absent and fiberal seizures. We have been told they are more behavioral disorder issues then seizures we have been refereed to a neuro physiologist which with her behavior issues its hard to deal with some days.

I know she’s had a few seizures and tremmers and we’ve been seizure free for a year. were starting to get answers and she’s just starting to get the help she needed since birth I been telling drs but they are reclucent to do anything with kids so young. So now at this point she’s off her seizure medicine and were waiting for the first neuro physiologist appointment. I would love to be seen at chop but we can’t afford two air plane tickets I’ve neven been on a plane let alone be on a plane by myself without my husband. The hospital will only pay for one child and one parent so I’m still trying to deal with figuring out how we can get her and I treated here in Michigan. I’m willing to meet up with people in Grand Rapids area and talk to anyone who has any questions as I’ve met a ton of people online who have 22q. As for me, in terms of career, I’m putting it on hold for my daughter so I can be with her full time. My husband is looking for work in the computer networking field and I did a hair stylist apprenticeship. It didn’t get my license and I am about 500 hours behind in my apprenticeship as I ended up getting sick more often then I was at work so i think for now I’m going to be the at home mommy for the next little bit.

My hobbies are playing my guitar, doing photography and photo edits and I like to meet new people and help others.