https://www.youtube.com/watch?v=VN0fgHEianY&t=93s Story time My daughter and I have 22q11.2 deletion syndrome
https://www.youtube.com/watch?v=B9kQzktsMRo&t=4s Our visit to the U of M Crainofacial clinic
https://www.youtube.com/watch?v=XmMMy-K0HH4 A vlogging experience and Bella
Bella has 22q and hypersnality and vpi I suggest you check out this link if you want to learn more about it https://www.apraxia-kids.org/library/velopharyngeal-insufficiency-vpi-and-apraxia/
have Bellas very last speech session today
Bella has 22q11 deletion syndrome, VCFS Velocardiofacial syndrome. She has a language delay due to VPI and VCFS itself. We attend weekly speech therapy since she was 2. Bella also has Adhd so sticking with what is needed and keeping on track with the speech exercises is a little over whelming to her and we have to keep on a routine.
I have been blessed enough to find a team locally that can get Bella help she needs for all of her issues and we can set appointments up for all on the same day so she can attend class in the am and then we go to her appointments in the pm. Except for when there is a ton of snow or it is raining really bad and we can't walk to and from school she stays home on those days and just does her appointments and not go to school in the am.
Bella is finally done with speech meaning we have done all we could and are considering surgery to do some fat graphing for repairs but we are also considering not having it done until she is much older. We have some more appointments such as psychology and physical therapy weekly and she is main streem with an Iep and is doing rather well and is beating all the odds. I also have 22q deletion syndrome. We wanted to share our good news.
Bellas last speech session ever! Our Biggest challenge is keeping up on all of the school that Bella has missed such as in class assignments and helping modify assignments for her. Bella works extra hard and sometimes has issues with the teachers at her school not understanding what makes her so different in needing extra support services as she appears like any other child. These appointments is how we mange all of her multiple health issues and stay on top of all of it. Working with the Iep team took a lot for them to get to an understanding but we are moving forward and she is maintaining her grade level and is passing.
I wanted to take the time to thank everyone for all of the support we have gotten on our Youtube channel
here is two more bonus videos
One is an amazing shoutout video done by 10 other youtubers another is a youtube cast sharing about what we do on our channel
https://www.youtube.com/watch?v=14cekwcP2ck&t=73s Tazwhole's Tubecast w/ Mommies Quiet Place
https://www.youtube.com/watch?v=48TZFgVLNUs&t=5s Mr teebees shoutouts and our youtube friends say a special thanks for Bella inspiring them so much