Little bit of back story first:
pretty much no one does a prosthetic for VPI in children because it requires so much parental supervision to make sure it fits correctly, you must get them resized, hygiene issues, the actual placement of the device in their mouth:
An obturator. Horrible isn’t it?
I am pursuing the prosthetic since it is in fact a viable option and alternative to surgery (a surgery which at the earliest wouldn’t occur until Josie was over 4 anyway). I don’t know why in the mean time we can’t try this. It isn’t invasive and we could just decide it isn’t helping and quit it, but why not try all the available resources? I mean, right?
The texts and studies and journals I’ve scoured basically just say they are not offered because it takes more communication and effort (in other words) and kind of like how they won’t send a kid home with an ng tube from Shands, craniofacial there just “doesn’t do” the prosthetic. So I was like, well I did my homework but I guess they just “aren’t done.”
Well enter genius Dr Steirwalt at FSU. She said, well I don’t see why we shouldn’t try it. So there was a lot of go-round and back and forth from her and me and Shands. Ginny Dixon Wood (22q expert / SLP / Clinician Head) called me and hyped up surgery and said that the obturator would just make her feel awful and its hard but right now all we can do is wait til she’s older.
Despite that Josie’s speech has hit a huge stride and she really, really wants and is trying to talk. Frustrating, right?
So I got this email today about it:
My name is [student I omitted name for privacy], we met once last fall when I came to your home to do a story book reading with your daughter. I was happy to hear that you were interested in continuing therapy for Josie, and I volunteered to be her clinician this semester. I was emailing to see what your availability would be to start up therapy sessions again this semester in the FSU clinic. We have a new, beautiful building that is finally ready. I’ve also spoken with Dr. Stierwalt and she had some more information she would like to pass on about non surgical options and additional service providers, other than Shands. Danielle and I will be working with Jose. I’ve spoken with your previous clinicians and am up to date on their procedures. I’d love to speak with you over the phone to see how Jose is doing…
How awesome! Right!? Today was just a really great day. And lately Josie has been taking all sorts of metaphorical and literal leaps forward in therapy!
I’m very proud of her. I really, really, really pray her next heart check up is cheerful and her g tube stoma doesn’t need any surgery, and we will be set for a while! Plugged in to all the right people.
Sincerely,
Mom who advocates her ass off and fights for her kid’s best interest tirelessly — aka — a Special Needs Mama
P.S. Go Noles.



















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