My granddaughter is 29 mo, born with PRS; trach at 1 day (removed at 1 year old after 1st distraction worked), g-tube at 23 days until present. She has had 2 jaw distractions, botox injections into the massiter muscles, and now a 3rd surgery to clean out extensive scar tissue in both the jaw joints as well as her mouth, and extra bone growth in the jaw joints. The surgeon says we have a 50/50 chance of this last surgery working. He could only get her mouth open 16-18mm at surgery, and said that if therapy is not able to get her mouth open more than 15mm, they will have to retrach her b/c her airway will become compromised as the scar tissue again takes over and locks her mouth down. If this happens, they'll just wait til she's 6-7 years old, and start all over again! Our therapists are trying myofacial release, ultrasound, a dynasplint and extensive oral motor therapy, but for all our hard work, she's still not really opening her mouth. She's quite orally traumatized at this point, but she's willing to work and is really trying but her mouth is just not opening. She wants to eat so badly, and tries everything we give her, but she's a huge choking hazard at the moment, so we are at Stage 1 level (pureed) foods. She also wants to talk, and you can tell she is trying hard to open her mouth to speak.
I don't know what to do next. I DO NOT want her retrached as I think this would be a HUGE setback for her. Anyone have experience with this that could encourage us?
We will be getting a second opinion before we retach her. Any encouragement or suggestions of surgeons/facilities would be greatly appreciated!
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