Cleft clinic was today. Things went long, but well. Recommendation for immediate follow up with the new team as soon as we get to WA were sited. We currently are looking at 2 surgeries in the future. The first would be to help extend her soft palate, and would need to be done as soon as possible. She has too much nasal emissions while she talks. When graded on the speech scale for this, she tested at a level 7. The lower, the better. The second, jaw extraction as soon as age 16.
No noticeable growth in her jaw. In fact, it appears to have slowed to an almost complete stop. Her jaw is pretty far back again. Was told of the new way they are extracting now. Exciting stuff!! No external pins or scars! It would be pretty similar to what hubby had done on his top jaw, with the whole cranking an extender.
The surgeon isn't worried about the small hole, where they joined her two uvulas during her cleft repair. He did say that if it appears to look like it is getting bigger, then there would need to be a surgery to fix that as well.
Emma played shy per normal, but got to see what the scope looked like. She says it looks like a black worm! She was VERY disappointed that they didn't scope today.
With everything that we have gone through to date with Emma having Pierre Robin Sequence, it's nice to know that there are advances being made, even if there isn't a whole lot of cases! I'm sure by the time she is old and gray, we will both be able to write books about it!
No comments:
Post a Comment