Monday, October 5, 2009

Save the date

Surgery consult is Oct 27th. That's also Eleri's birthay, and was my Dad's birthday, too. Rowan has a habit of doing things on 'special' days.

Thursday, October 1, 2009

Team visit

We had our team visit today. Sharon, the one who usually is running the show and coordinating everyone, was out on medical leave. And boy was it noticable! She runs a tight ship, and I pity anyone trying to fill her shoes. The guys today did their best, but that didn't change the fact that we spent most of our day like this
waitingarea.jpg picture by sweetteasoakers
instead of in with the docs. It was a lot of waiting and playing with bead tables while John and I sat around looking/being tired. But we made it through, finally escaping and taking our starving selves to Hardees because that was the first place with not hospital food. Bad idea to move the Wendy's out of the neurosciences building, UNC!
So usually when we have a team visit, I give a line by line and specialty by specialty report, but I'm not doing that this time. ENT and pysch and social were all - great kid, looks good, nice family, no recs. Plastics said the same old - we'll do the nose and lip when he's ready but we're fine with waiting until he wants it. Speech was the same - no leakage, huge vocabulary, thanks for coming!
Orthodontics was the part that we were looking for, because of his visit this summer where the molar wasn't in so they couldn't put the expander. We were seeing if the molar would be in now, or what we needed to do. We've been waiting on this tooth for a while now, and it's STILL not in. It's right up next to the tooth beside it, and is hung up there unable to come down on its own. The orthodontist said they could put in a spacer, and that would give it room to come down. And then she pulled up his xray and dropped a bomb in my lap.
june09xray.jpg picture by sweetteasoakers
This one is not labled. I have one labled for you farther down. This is our boy's head. Isn't it lovely? He has all these nice permanent teeth just waiting to come out. Good healthy teeth, some of them teeth that he would not necessarily have. Isn't that exciting?
BUT... Two of his teeth are in a dangerous situation. They are right next to his open cleft. If they erupt into the cleft, the surgeon will have to remove them when he does the bone graft. Meaning two of the teeth in the front of his mouth will be gone - forever.
So the original plan of expanding the palate before bone grafting? Scrapped. The spacer being put in to allow that hung up molar to come down? On hold. Coming at us fast and furious? The bone grafting surgery.
The orthodontist assured me that although they prefer to have the palate expansion done before the bone grafting, they can do it after. She said that we needed to get going on this now, to take away the risk of losing those teeth. Now as in, we need to make an appointment with Dr. T and get a surgery date. Now as in, let's get you set up for more x-rays when you see Dr. T. Now as in, we'll call you with your appointment time.
We couldn't see Dr. T. today because he was in surgery. Good guy. Practice a bunch more before you put your hands on my little boy, okay?
I was not expecting this news. Rowan was not expecting this news. I think the hardest part of all of this (besides going through the actual surgeries of course) is hiding my reaction from him. I can not freak out, or get teary, or clam up, or any of the things I would normally want to do. I have to keep it together, stay calm, and have my happy matter of fact thing going - because anything less would freak him out. He already thought we meant today, and looked at me with his big eyes for a minute. We're already talking about it. Where they will take the bone from (his hip), when it will happen (we don't know yet, but soon), what will it feel like (it will hurt, but we'll give you medicine and you won't be awake for the surgery part at all), what he will eat (LOTS of ice cream and yogurt and blended food)...
We will be talking and talking and talking, because that's how he does it. And maybe we will cry, and that's okay, too. It's okay to cry when you're scared, and surgery is scary. But at least we get to go ahead and get this part of it over with. And then it will be done, and we can move on, right? Because it is what it is, as Heidi says. It's not what we'd ask for, but it is what it is, so we deal with it and go on.
So that's where we are. Waiting to hear when we see Dr. T. Getting a surgery date. Getting a bone graft. We haven't had a surgery for a long time.... but it is what it is.
Here's a labeled xray so you can see what I'm talking about. Any questions? Just ask.
june09xraylabeled.jpg picture by sweetteasoakers