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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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 wants to raise awareness of speech issues

Hello, everyone, You might have read about our doctors visits to Mary free Bed and that we have appointments on Tuesdays in Grand Rapids after Bella neuro evaluation was done we are officially starting the treatment process and I wanted to share with all of you in hopes it helps others who have speech issues to know you are not alone. 

Bella wanted me to write a blog post to share about the treatment of speech issues and to help others who are going through the process and also to bring awareness about others who do not know what a speech pocessing disorder looks and sounds like.

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Speech and language processing disorders is what I am sharing about as that is one of the treatments Bella is going through and I wanted to share to help others who have children who are also going through speech therapy with their children.

This month is not only back to school for Bella but we also started speech therapy every Tuesday.we will have sessions. that will help Bella with programmatic language and language processing disorders. 

First I wanted to share with you some information on What are Programmatic language and language processing disorders?

Chances are you too are wondering if your child is struggling with this or if other children are struggling with the same issues Bella is struggling with. 

While speech and language therapy generally help phonological and expressive language difficulties (speech), there is less evidence to support its effectiveness in helping receptive language difficulties.  The receptive disorders are where Bella struggles in and that is common among children who have 22q11.2 deletion syndrome. Typically with speech therapy, they can improve and live fully functional independent lives but you need to stay on top of these appointments and therapy and you have to have a treatment plan that is individualized. To help receptive language, you need to exercise listening skills, not speech.

  If you meet Bella she can talk circles around anyone and will tell you stories and talk for hours and miles at a time. You can understand her sounds and hear her very clearly.

With the hypernality issues almost gone she is doing so well you would not know where to start when it comes with Bella but after her neuro evaluation we can see an entire picture of her issues and we know where to begin and have started the process to treatment plans.

I am lucky to have speech, psychology and physical therapy appointments every single Tuesday all on the same day yes they are back to back and even makes Tuesdays very long days but the goals and treatment are worth all of the effort, time and even money that is spent to get these therapy done. 

Treatment goals are to start tackling cognitive listening skills.  This includes auditory processing, working memory, listening accuracy, listening comprehension, attention, sequencing.  These are the foundational skills for receptive and expressive language.

For At-Risk Readers which includes my Bella when she tested at school, she fell in the high-risk category kids with attention issues usually fall under this category and Bella is about a year behind developmentally so I was not shocked to see this is where she was at.

The treatment exercises are to help reduce the symptoms of language processing disorder, helping Bella build phonological awareness for decoding and reading comprehension.

There you have it all of it out in the open in terms of Bella's speech and language issues

. I hope this helps Bella's speech and language treatments at the school level as well because there are medical issues and then there are educational issues.

I am learning in Bella's treatment how this would effects Bella in the school setting one example is social cues so a language group or friendship group would be an excellent way to help Bella with this at school whether or not the school will do this is up to the school.

I will ask and see what can be done at the school level to help with the medical stuff we are dealing with. All of this is for me to accomplish with doctors

I only have 4 hours each night with my kid before she has to go to bed at 8 to get up and go to school the following day.

This language processing issue is not going to go away because you see she looks normal. People often assume and think oh Bella appears fine to let's ignore the struggles she has because she is not with the same severity as other kids with speech and language issues no Bella is unique with how 22q11.2 deletion effects her and she does need the help and support. No longer will I let Bella suffer in science

My hope in this post is that this helps teachers nurses and doctors understand from a parents perspective and from the perspective of someone who also has 22q11.2 deletion who went through speech therapy and didn't get all of the help I needed because I too appeared and looked like the typical normie child like Bella does. I am so thankful we are doing this and I am hoping this post does help Bella and others like Bella. 

Here is a video of what Bella sounds and looks like and how she feels about speech therapy

 

If you or your child are in speech therapy I would love to hear about your experiences in the comments blow.

until next time keep the faith and have fun with treatment programs.