11 days post op

His post op appointment is tomorrow. Things are going well. I can't wait to hear what Dr. T. says. I try looking in there but I have no idea what I'm looking at in there, and mainly what it looks like is weird. I have no basis for comparison.
His swelling has really gone down.

He has been being a normal boy for the past few days. I would have sent him to school today, but they had a teacher workday so it was another day at home. The post op appointment is tomorrow right before lunch. I will remember the leapster and didj this time, so maybe it won't take so long. Or if it does, maybe it won't feel so long.

You can see he's still a little puffy right around his nose. He has that Who from Whoville look going on. But even compared to a couple of days ago, he looks really good!

6 days post op

I need to order some rope to tie him down.
He only needs ibuprofen for pain, now. And if he didn't still need a nap I might be tempted to send him to school. But I think we should probably play it safe and keep him home for the rest of the week.

He looks good though! Only a little swelling left!

Monday night

Rowan had a great day today. Connor came to play this morning, and Robbie came over this afternoon. He's a little sore tonight from moving around too much, but I swear I would have to tie him down to keep him still. Isn't that wonderful?
Tonight's swelling pic, with most of the color taken out because the light was so bad.
He's starting to look more like Rowan!

And a few of you keep wanting to know about what his hip looks like. I was surprised at how small the incision was. It is healing very well.

Monday morning

We had a small breakthrough last night.
Rowan willingly looked at himself in the mirror on his way to bed. He has been avoiding all mirrors, and would hold his stuffed tiger over the lower half of his face when he went in to use the bathroom so he wouldn't have to see himself. It's been very sad to see, but I understand. He just doesn't look like himself too much, and he didn't want to see that.
He also willingly looked at the stitches on his hip - something else that he's been avoiding.
He's feeling much better. I've had to say something to him this morning about trying to run (awkwardly).
"Rowan, don't run. It's too soon for that."
"I'm not running, Mom. I'm just jogging."
"Well, don't jog either. Not yet."

He's back!

Quickie update

Rowan is doing very well. He's still very swollen. I realize that all of you are wondering and probably don't want to wait for me to get my ducks in a row and write about it. Sorry, I forgot to consider that.
So here is Rowan, playing Wii yesterday (2 days post op) and having some jello this morning (3 days post op)

2 days post op


3 days post op

Pre-op for the bone graft

WOWZA. It was a really long day.
We got there at 1, but they were running behind (when are they not?) so it was over an hour before we got back to the room. Once we were in the room, we saw the chief resident, Dr. A. for the initial stuff. He had a look in Rowan's mouth, looked at his chart, and ordered x-rays.
More waiting, and Dr. A. came back, surprised that we hadn't had x-rays yet. He decided to go on with other stuff in the meantime, and right when he did the x-ray person showed up. (of course)
So we went off to x-rays and Rowan konked his head on the chair when he jumped in with enthsiasm. He's my kid. But it was okay, and they did small x-rays of the top of his jaw to get a good picture of his cleft - so they'd know if they needed to graft both sides. (They do.)
Back to Dr. A., where he did the exam and talked to Rowan about what would be done, answered questions, explained the consent form, and did all that.
Then on to Dr. T. (more waiting) Dr. T. is awesome though. Talked to Rowan first about what he was going to do and how, and made sure Rowan understood just what was going on. Then he pulled up the x-rays, looked in Rowan's mouth, at the x-rays... mouth... x-rays... mouth... it got to be pretty entertaining as he figured out what his teeth had been up to in there. (A lot of crazy.) He said that he will remove some teeth as he does the graft, possibly up to 5! But they'll be baby teeth or extra teeth. Rowan is part shark. But he needed a panoramic x-ray to be sure he could see the roots to know what tooth was what, so it was back to radiology for that. They were closing, but Dr. A. grabbed someone and got them to do it, and hung out with us to make sure it was a good one before sending us over to the big hospital for pre-care.
Pre-care is the pre-admitting thing, where they give you instructions and what not. By this time it was 5:00, but Dr. A. had called over and told them we were coming, so they were there waiting for us. They checked his BP and pulse-ox, gave us the special soap, told us that we won't get the surgery time until the day before, BUT he can have clear liquids up to 2 hours before we're supposed to be there. YAY! Then we found out that Rowan needed another x-ray, of his hips. So we went to radiology (a different one this time) for that.
We left the hospital at about 6pm. So all in all, 5 hours. His actual surgery should be shorter than that.
Now, the big questions, answered....

1. How long will the surgery take? A couple of hours.

2. How long will he be in the hospital? Most kids only need to stay one night.

3. How long will he need to stay home from school? About 10 days or so. His post op is 10 days after surgery, too, so that works out well.

4. How long will he need to eat a soft diet? About 6 weeks.

5. What about pain? His hip will be more sore than his face. He'll feel pressure and numbness in his face more than pain. They'll give us tylenol with codeine for the pain, and Dr. T. will inject a local anesthetic into his hip while he's still in the OR to help out. Physical therapy might send us home with a crutch if he needs it to help walk.

6. How is Rowan handling it? It's kind of hard to tell. He says that he's doing things to help him feel more brave and not so scared, but he is scared. I told him that was okay, because I'm scared, too. And it's okay to be scared and even to cry if you want to. He is also very matter of fact about it, saying that this surgery is one of the HAVE TO instead of the WANT TO surgeries (like his nose would be) so since he has to do it there's not much to be done about it. They gave him a teddy bear in pre-care today, and he's named it Dr. Bear. It's from Build-A-Bear, so I think I'm going to go by there over the next couple of days and get Dr. Bear some scrubs to wear. He was walking around the hospital and dental school like he owned the place, and chatting up all the nurses, so he IS comfortable there. He knows he had surgery there when he was a baby, so that helps. And we're going to give him a send off at school on Wed, and have a bunch of crunchy snacks to share with his friends, since he won't be able to have crunchy things for a long time. He's focusing more on that, and on other positive aspects like all the pudding that is on the horizon.

7. How am I handling it? Deep breathing, being positive for Rowan, crying by myself when I get overwhelmed. You do what you gotta do.

Any other questions? Just ask. I'll answer them as best as I can.

preop moved

Pre op has now been moved to Jan 5th.

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.