Thursday, September 25, 2008

Craniofacial Team Day

Okay. It went well. Here's all the gritty details, probably more than you wanted to know!

Orthodontics - Rowan will need a palate expander, but his first permanent molars haven't erupted yet so there's not a place to cement it in. We have to go back in June for a panoramic x-ray and to see the team orthodontist about that. He does need expanding before his bone graft, as he has a crossbite and they need to widen things before they put in his bone graft.

Plastics - Rowan can have a lip revision any time he wants. Dr. VanAalst would like to narrow his philtrum and increase the fullness in his lip to give it more of the natural cupid's bow appearance. This is totally up to Rowan as to when it would be done. He will also need his nose lifted at some point, but it would be better to wait until after his bone graft for best results. He's a handsome kid, and we're going to follow his lead here. He says that he thinks it would be cool to have surgery and eat ice cream, but he probably wants to wait until he's 7 for that.

Speech Language Pathology - No nasal leakage, age appropriate sounds. He does have some kinds of "clefty" sounds, but they're not consistant and when we ask him to repeat he does it properly. No reccomendations. Rowan will continue to participate in the research study for speech in June. They'll make a mould of his teeth at that time. They also tested his vocabulary - he's at the 7years 8months level there. Smart kid!

Oromaxillofacial Surgery - We need to make an appointment with Dr. Turvey for a separate evaulation for his bone graft. He'll want a panoramic x-ray. This could possibly wait until June, but might be sooner. They'll conference about it with the Orthodontist and let us know. They're also pretty sure that he'll need a midfacial advancement in his later teen years.

ENT - Rowan has outgrown all his ear issues. His hearing is great, and we just need to keep on with our regular ped for his asthma.

Psych - Great kid, well adjusted, no worries. Hooray.

Social Work - We actually didn't see her much, because she hooked us up with a new person who is trying to start a local group near Wilmington. So I got her info and will get her the stuff she needs for Pathfinding and plugging into our NC listserv. Kim also gave us a replacement feeder and nipples so I can redo photographs for the sippy cup page on cleftAdvocate, and gave me an article on the Victory Junction Gang camp. Rowan will be old enough for that next year.

Dentist - Good oral hygeine. Keep up the good work. His extra tooth in his palate isn't loose. We'll leave it alone unless it's an issue.

So, what does all this mean?

Rowan is doing very well and is not too complicated. He needs a bone graft, but his palate needs expanding before then. They need an x-ray so they know how much bone he needs and where, but they want to wait until his top molars come through to do it so they don't zap his head too much. Once he has his top molars, they'll zap him and put in the palate expander. Once his palate is wide enough, they can do the bone graft. He will need the bone graft before his permanent lateral incisors try to come in (if he has them) so they have something to hold on to. It's all very time-dependent on what his teeth are up to, so we'll be in touch. For now, we have a little bit longer before we have to jump on the horse again.

3 comments:

TAMI said...

Wow Milli- it sounds like you had a great overall visit with Rowan's team. Love hearing the updates since our boys are so close in age & both have BCLP... At times I wish we had more of a set team here in our lil town, even more now with the issues with the teeth in his palate. Thanks for sharing! Give Rowan a high 5 from Idaho!

Fowler family said...

Milli,

Glad it all went well with the cranio team. And the gritty details are fascinating to hear about when you are a fellow mom with a child/children with clefts because it gives you a little peek at what to expect in the future. So do tell! :)

So wonderful Rowan's speech has turned out so good and he has no hearing issues. I bet your momma heart feels like it can rest a bit in those areas.

Love how your little guy is so simply optimistic about the future options- "have surgery and eat icecream".

Good luck with everything. -Anna Fowler

PS- you have such a relaxing, beautiful blog!

karenmom2aaron said...

Glad rowan had a good visit. It was really nice to get to visit with you as well. I keep watching to see updates on the pregnancy. Btw aaron's fistula is getting bigger. Oh well. He is still learning new sounds every day so we are better than we were before the surgery.