Surgery scheduled

We saw Dr. T. last week. His office is way cool. He has all these different models of infant skulls and how they are affected by various clefts and/or syndromes. Very interesting.
But anyway... He agreed with the orthodontist, that Rowan needs his bone graft sooner rather than later. But he said it wasn't so urgent that we couldn't enjoy Christmas first.
So surgery is scheduled for Jan 14th. Pre-op is Jan 12th.
He'll be on a liquid diet for a couple of days and on a soft food diet for 6 weeks. Also no PE or recess for that 6 weeks.
So that's the news. We're hanging in there. January is sufficiently far away for us to forget about it for now.

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.

Team visit

So...
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

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.

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.

Team meeting coming up

Team meeting is Oct 1st. When we went to see the orthodontist this summer, they said that his molars weren't in enough to put on the expander. But his front teeth still weren't loose, so we have time. They said they'd take a look when we came in for team. If the holdout molar still isn't down enough, they said they might put a bracket on it and pull it on down.

7 years old today

There were days, way back in the beginning, that I never thought we'd get to where we are today.
I never thought it would be hard to remember how it felt way back when, when Rowan was born and the doctor told me that he had a cleft and then put this little stranger on my belly.
I couldn't imagine that the hours of pumping and then squeezing the milk into his little mouth would disappear into that foggy haze of the past.
I couldn't picture him learning to walk, to run, to ride a bike...
I never imagined him on a soccer team.
I certainly never dreamed of his mohawk.

I remember the threat of surgery looming over our heads, and then it was happening, and then it was done, and then it was just something that happened a long time ago...

And here we are.
This is Rowan.


He loves dogs, riding his bike, and computers.
He's better at Mariokart that I am.
He can read. He's very good at writing. He draws well.
He makes this high-pitched noise that could make your ears bleed.
He sings to his baby sister.
He wants to be a vet when he grows up.

Honestly, how did we get from that baby to this boy? Where did it all go?
I can remember life before him, but I can't imagine it. I have to stop and think, "wait... that was before Rowan was born." How did I even exist before this boy came into my life?
I'm a completely different person today than I was 7 years ago.
7 years ago I was afraid and ashamed of feeling the way I did. I was looking for someone to blame and someone to make it all better *rightthisminute*.
This life is incredible. This world is magical. God is wonderful and mysterious and loves us more than we can possibly imagine. He chose us, chose me!, as Rowan's family. I couldn't have known it then, but I know it now - how very important that is.
Some people sparkle. Rowan is one of them. Aren't we lucky?

That's some set of chompers!

As a pre-orthodontic anything comparison - here is what Rowan's mouth looks like at age 7, before any orthodontic work has been done.

On the left is his complete cleft, and his incomplete cleft was on the right. (This is as you are looking at the picture. It's really the other way around in so far as his own personal right and left.)
The complete side has a tooth way up in the cleft. The incomplete side has the perfect tooth, turned sideways. He has lost the 4 teeth on the bottom, and none on the top.
Those are his own fingers holding his cheeks open by the way. He thought getting this picture was pretty funny.

Ready for phase 2...

I just got off the phone with the orthodontics dept of the team. We're set to come in on June 11, to get his panorex and preliminary evaluation.
Rowan is going to have to have a palate expander put in. He has a crossbite, which is completely normal in a kid who had a cleft palate. He's going to have to have that fixed, and get his bone graft, some time in the next few years.
She said that he'll have x-rays and his evaluation on June 11, and then depending on how things look is when they'll start the ball rolling. We'll have another visit a few weeks later where they take a complete history (even though they have all his old records, she said they have to do it again at this new phase) and take the molds of his mouth. They'll figure out a treatment plan, and we'll be presented with options as to what we're looking at.
She said if all goes as it usually does, we're looking at getting his braces in August.

All of this is very foreign to me. I never had any of this done. John had braces, and had to wear head gear at night for some of that, so he's going to be better about knowing what Rowan's going through than I am. This is all for the good stuff though. Rowan's got a good foundation so far with his teeth, and all we can do is wait and see what they say.

I'm taking deep breaths. I'm going to be excited for him instead of fearful. At least I had to get molds of my teeth made recently for that nightguard, so I can show him those and how cool it will be to have that kind of thing done with his teeth.

All I can think is, "Here we go!" This 4 years of no surgery, no therapy, no nothing is about to come to an end. I forget what it's like to have monthly appointments. But here we go.
Here we go.