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.

I wrote this on Rowan's 4th Birthday

May 12, 2006
I became a mother on Mother's Day. Fitting isn't it? To join the ranks of so many, on a day meant just for them? We all thought so.

My pregnancy was just like any other. The excitement when we first found out. The nausea that followed. And then I had that extreme nausea reserved for a lucky few - hyperemesis. We soldiered through it with a picc line and zofran, and by midway through my pregnancy I was back to work and back to normal. I must have spent hours dreaming of my baby. What he would look like (we found out the sex) and how he would sound. His soft little head and tiny hands and feet. I looked forward to his birth every minute of every hour of every day for 9 long months. 38 weeks and 1 day to be exact. We all know pregnant women count down in weeks to that magical 40, the due date circled on the calendar, the day the dream comes true.

My water broke in the afternoon, the day before Mother's Day. It was time. I can still remember that drive to the hospital... joking with my husband about how the bad paving job on the road was not making contractions any easier. Arriving at the hospital (where I'd worked in Labor and Delivery until 4 weeks prior, when I got sent home to bedrest) to all my friends saying, "Are you here for real?! Yay!" Changing into the gown I'd handed to so many women before me. It was finally my turn. Finally my time to have a baby that I could take home and keep.

Little did I know that soon I would be joining another sisterhood. This one is much smaller. We are the ones whose moment of delivery is accompanied by a small gasp - nearly inaudable - that comes before words that make our hearts fall to the center of the earth. I will never forget Jodell's words as she delivered Rowan into the world. She said, "Milli, he's beautiful. But you need to know before I give him to you. He has a cleft lip."

There. Did you hear it? That gasp. It means the world as we knew it had come to an end.
The dream baby we had planned on and wished for - for 38 weeks and 1 day - didn't get here.
Instead, I had this little stranger. This baby I didn't bargain for or count on. This life that was going to have an extra hurdle. for all of us.

Those first few days are days that no one can understand unless they've been there. We of the sisterhood know all about it. The tests, the reassurances, the platitudes... some blame. A lot of guilt. It doesn't matter if the baby has something highly visible like mine did, or something that couldn't be seen at a glance, but was there waiting to be discovered. We've been there.

But slowly, this little person who I didn't ask for and didn't want began to do something to me. He wrapped his little hands around my heart and found a place there. He looked at me with a soul older than time, and a purpose greater than myself. And he became everything in the world to me.

I learned to pump so we could feed him. John and I both became masters at reading his cues and timing his swallow so we could squeeze milk into him at the right pace. Those newborn days are a blur to me now. Aren't they always? By the end of that first week, the joy had replaced most of the fear. We had relearned what beauty was. It wasn't a baby's face. It was the way he burrowed his little head into your neck as you picked him up. It was every little thing about a person, all put together into one little bundle that stole your heart.

That bundle has grown. My has he grown! We got through that first tough year. We spent some time doing therapies. But mostly... we've just had our boy. Our loving, bright, imaginative boy. Can you believe he's 4? Four years ago I couldn't imagine this day. Four years ago I was in a fog, and didn't know how much joy that little baby would bring to me. I'm glad I got to find out.

He's my beautiful, amazing, fantastic boy. And today he's 4. Ask him if he's special. He's got the pefect answer. "Ya. I'm just a pretty cool kid. I'm a regular kind of guy."