So when you hit the form submission to subscribe there is an option on my website where people can ask questions. I have a Q and A Page and also welcome any questions any one might have at the end of some of my blog post or videos.
One of our reader writes this question to me and here is my answer I hope this post can help someone else going though something simular please like and share if you found it helpful
Hey Amanda I came across your blog when I watched the video of your daughter, Bella, who didn't need the surgery for her VPI. I have a 4 year old daughter, Angela, who has VPI from her 22q deletion. I was wondering whether you would mind sharing Bella's journey of living with VPI and how she got to the point that no surgery is needed, through speech therapy? her speech condition as she grows up. I greatly appreciate
Here is my answer
I have an 11 year old daughter name Bella who you all know and love from or website and videos. Bella started attending speech theraphy when she was really small as part of early on prevention program and healthy start. Bella started to sound hypersnale that’s code for vpi and vpi is short for Velopharyngeal Insufficiency (VPI) and Apraxia - Apraxia Kids a link to help you read more about it here. To sum it up it’s air that goes up her nose making Bella sound like fran dresser a famous actress known for her hypersnale new york accent.
Bella does not sound hypersnale unless I point it out to you and you really have to listen to her to pick up the turbalance. Bella had evulation for speech theraphy before she was 5 years old as a women living with 22q myself I knew what to look out for and what to test. Bella speech journey started at a hospital in grand rapids and then after that we were refered to even more specialist and one after the next it involved weekly treatment visits. A lot of work with announcing words coorectly and with proper speech drs who understood and knew what we were up against with having a genetic disorder we showed Bella a few tricks to look in the mirror and practice saying words that came out the mouth instead of up and out her nose. Bella is 11 now it was not a easy journey and nothing has been handed to us. I had worked really hard at learning all I could and connecting networking with specialist in the field asking them questions as well which lead us to where we are at now attending u of m clinic once a year with Bella being almost 12 now I am at the point where we either do the surgery or we do not do the surgery so for all of these years I was telling them look we need to take tonsils and adnoids out now we are being told that’s about all Bella will need is tonsils and adnoids out. What about the adnoids and tonsils helping to prevent the major amount of air going up her nose.
We have been going to the U of M clinic since she was 7 or so and every year we debate on if she needs it or not based off the scores and cut off points. One time Bella didn’t even have a score for hypersnale the next Bella had a score and we even had a surgery date set. I can only assume our prayers have worked and helped baffle doctors and medical professionals. I posted a video of her talking about it and her hypersnale experience.
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