Whether you turn to the right or to the left, your ears will hear a voice behind you, saying,“This is the way; walk in it.” Isaiah 30:21

Friday, September 28, 2012

Craniofacial Appointment

 This past Tuesday, we got up early and headed to Chapel Hill for Grant's first craniofacial appointment at the UNC School of Dentistry. His appointment was set for 8am and they got us in right away. At a craniofacial appointment, you see a team of doctors of different specialties in one day. Obviously, because all children and their specific craniofacial problems are different, which specialties you see varies. The first doctor we saw was a Craniofacial Pediatrician  He did an overview of Grant and addressed a few concerns of mine (constant swelling under his eye, a large vein in his nose that randomly shows, and scar tissue build-up from his skin-tag surgery). Next up we saw a nurse who did what nurses do-took all of his stats and created a journal of where he was at developmentally, how much he ate and of what, etc. (By the way-he weighed in at 20lbs, 4.5oz. at 7months, 2 days-definitely no feeding/weight gain problems like most Goldenhar babies have.) I really liked her-she was a patient there at the center her entire childhood (she was born with a cleft lip, among other things), so she really was able to connect well with us. We also saw a speech therapist, ENT (ear-nose-throat doctor), Child Psychologist, and a team of Dentists (we didn't have to see an Oral Surgeon this time, although we will in the future).-We see plastics, urology, and ophthalmology separately. The speech therapist said his speech is perfect developmentally. The major, common concern among all of the doctors we saw was that he will probably have a speech impediment due to him having a bifid uvula. Right now, he doesn't sound like he does, but we just have to wait and see. Deafness and/or hearing loss is very common in GS babies-Grant passed his newborn hearing screen, but they cannot rule out hearing loss. The speech pathologist checked his ears, but he had a nasty cold, so there was negative pressure. We'll have to see a local ENT to get them re-checked after he gets over his cold. The child psychologist said he was great developmentally. She will help him deal with all of the hard stuff when he gets older-why he was born with GS, looking different, and bullies. I refuse to even let my mind venture into all of that right now. We didn't accomplish much with the ENT because Grant was so tired and cried most of that appointment. Poor baby. The head ENT did ask me if they could contact me about possibly putting Grant in a Goldenhar Syndrome study that UNC was chosen for. It would be after his first birthday, so I told them it would definitely be something we were interested in. The team of Dentists (around 5, plus students) were my favorite-seriously the most upbeat, positive dentists I've ever met. When they saw he had two teeth during the examination- they cheered. They actually cheered and let loose a few "whoo-hoos!". Dentist humor? Don't know, but they said his anatomy was perfect right now.

After we were done, all of the doctors we saw will meet together and come up with a report for me and a game plan. We will see them once a year until adulthood. They will monitor his growth and determine treatment when issues arise. The basic gist of what all of the doctors told us is that this is a waiting game.  He may have to have another plastic surgery to his ear to correct the skin there and ensure it doesn't cover his ear canal. He may need ear tubes. He also may need corrective surgery to his bifid uvula.  We really don't know yet. But, we do know that in the large scheme of things, Grant's Goldenhar diagnoses is much more minor compared to what it could be. 

This little guy is such a blessing to us and brings us (and everyone who meets him) so much joy. 

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