Cerebral Palsy & 22q11.2 deletion syndrome & Velopharyngeal Insufficiency

Bella says thank you everyone for the Birthday wishes. She said go check out our Youtube channel. Bella has been busy with running for girls on the run every Monday and Wednesday and on Tuesday we have her doctors visits,

Psychology, ot and pt. We are taking a pt break until the summer because in Pt we do pool therapy and that's a lot of physical work for her legs. Running keeps Bella's legs active and strong so her legs do not have that many spams. The leg spams still happen even on a mild mussel relaxer but we have come so far along with treatment.

This year was surly the hardest when the winter time was here with the flu we had in Michigan Bella kept picking it up every time she would get better and we sent her to school. Now things are good and all set she been doing so well. Studying for the state test at school that dreaded M step test. We have a trip to u of m booked for another nasametry and a scope. We are still trying to decided if surgery is a option we want to consider for physical over cosmetics appearances.

Bella has hypersnale speech vpi for short is what we call it

here is a link that shares a bit more about what it is it is apart of her having 22q11.2 deletion syndrome.

This is her major issue other then the leg spams from the cerebral palsy issues it effects her legs and we do treatment every Tuesday with the help of Ot pt and psychology and we will start up with pain management soon.

https://www.dystonia.org.uk/dystonic-cerebral-palsy 

The speech issues we are addressing with the craniofacial clinic at u of m we will have another test done in June to scope and nasmetry and compare last years results to this years to help to see if fat graphing an surgical option for Bella. I at this point have no desire to inject fat only to have to re do it in a few years later after it stretches.

I am hoping for a different alternative to fat graphing but Bella does not need the full repair. At this point I am thinking we might just wait it out until she is an adult but then the issue is adults get stuck with crappy insurance after they do not quality for medicade after 19 years old. I'm considering all options and keeping an open mind and seeing what the experts have to say.

here is an article I found about vpi hypersnality like what Bella has https://www.childrenshospital.vanderbilt.org/services.php?mid=7279

 

 

 

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 Bella inserts Afo she used to have to wear leg braces at night now we have these cool inserts they look a lot like the regular inserts and they match her new balance really nice.  see photo above you can't even tell she has anything in her shoes. These help with impact when she walks has even helped improved her posture. Bella legs still get tired and sore and spasm happen sometime but they have come a long way over the years before where she would wake up crying and screaming in pain

Bella inserts Afo she used to have to wear leg braces at night now we have these cool inserts they look a lot like the regular inserts and they match her new balance really nice.

see photo above you can't even tell she has anything in her shoes. These help with impact when she walks has even helped improved her posture. Bella legs still get tired and sore and spasm happen sometime but they have come a long way over the years before where she would wake up crying and screaming in pain