Yesterday we took Rachel to Dr. Biavati, the Ear-Nose-Throat doctor/surgeon we had been referred to. It was a really encouraging visit. He took a look at Rachel and pretty much confirmed most of what we had heard so far, with a couple of additions.
He said that Rachel's soft palate isn't even really a quarter developed; it's basically non-existent. This will require surgery for her around 11 months of age. This is kind of the magic age for this surgery because it will allow Rachel's mouth to develop as much as possible before she starts trying to form words, which would be difficult without the soft palate and properly formed uvula. Ideally, we would wait til Rachel was 4 or 5 years old for development's sake, but in order for her start out speaking normally, 11 months is the latest we can wait. So probably next October will be surgery time for little Rachel. It will be an inpatient procedure with a one-night stay, likely at Medical City. And some type of therapy will also follow in the days afterwards. I don't know what that will look like just yet.
Additionally, Dr. Biavati informed us that infants without their soft palate are at a slightly higher risk of developing hearing loss because fluid tends to sit near their ears and drain properly. It is possible that Rachel will need to get tubes in her ears to prevent that. We'll return to Dr. Biavati in 3-4 months, and that time he'll let us know if she's got that fluid hanging out or not. If so, we'll proceed with the tubes. If not, no tubes!
Rachel has been eating very well, and we really want to see some weight gain by her next pediatrician visit on Monday. We're pretty certain that we don't need to see on Occupational Therapist for feeding, but a little wait gain would confirm that even more. She's doing great on her diapers, so we're confident that she's getting the nutrition she needs.
I'll post again early next week with an update about that pediatrician visit. Thank you for your prayers!
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