One Step Closer to Understanding

The Cleft Team doctor's office called the other day and as luck would have it, Mama was home. And after that conversation, I am thankful that I was.

They were basically confirming a doctor's appointment with the Cleft Team Orthodontist. And we basically started chatting.

The bottom line is that on one day you have three doctor's appointments. THREE. Yes. And since Mama will be in Texas for work, your poor, wonderful, long suffering Daddy would once again be taking you to the hospital alone. Again.

The doctor on the phone thought that you would have your bone graft and P-flap surgery all at the same time. But not sure until they could get another set of xrays to determine the growth of your canines. Evidently, they cannot do the bone graft until your canines are budding. If there is nothing to "anchor" the bone into place, the grafted bone will be "reabsorbed" by the body, leaving behind soft tissue. And since teeth will grow where there is bone, it is important to know when you canines are starting to take root. There are reports of children with cleft that have what I call "barracuda teeth" - rows and rows of teeth with some growing though the roof of the mouth!

She also mentioned that it would include removal of the ear tags, the nose revision, lip revision and the hemifacial microsomia - which she informed me was very very rare - and to have it happen along with cleft, was even more rare. I almost felt like I should feel "special" about it because it was so rare. Uh...

But before the bone graft surgery can be done, they may have to put in the palate expanders. And then you will need a retainer and braces until the surgery. And through the surgery. And then after the surgery you will be into teeth braces - none of which is fully covered by insurance. Ahem.


I told the doctor on the phone that I was worried about your surgery being scheduled in two years when you are 11 years old. There was some confusion because she thought it was going to be sometime at the end of this year. Hmmm. Interesting. But it seems that a lot could be up in the air depending on the growth of your bone. Right then and there I decided that you will be drinking A LOT of milk going forward!

I also know that you need to have your tonsils out before the bone graft and P-flap surgery because the surgeons do not want to have to deal with pushing them out of the way. The ENT appointment is later in May so we will know if you will need to have them removed.

So I explained to the doctor on the phone why I felt the urgency. People are starting to make fun of you. She said that you would have to be really outgoing and develop a really great personality because, Yes, kids are cruel and they will tease but you need to grow a great personality to over come it. I think you have a pretty big personality already and you are not shy or retiring so that's good.

I also said I worried about you having swimming because you have air escaping through your mouth and nose. She told me that I should just let you do what you want to do. And if you fail, then we can explain why but that it is important for us to support you in what you want to do. Got it. Check. No issues with this one.

Then I explained about your speech. There was a long pause and she said, you "are never going to be completely normal." And that you "will always have a slight speech impediment." And that you and I "are going to have to accept it and move on." And that how much of an impediment you have will depend on "how hard you are willing to work at speech." I told her that you are not afraid of hard work, and when we correct you, you will repeat it over and over until you get it as right as you possibly. Of course, that is only when you are consciously practicing ONE WORD. When you talk in sentences, you are still taking too fast, and you slur your words, and don't finish or start them correctly. In fact, if my back is to you, I have no idea what you are saying. And when I am facing you I have to read your lips. She understood this and didn't tell me that I was wrong. She understood and said that was expected.

She also told me about a foundation for children that I will be looking into.

It was really good to talk to her. It was not the news I wanted to hear but now I can move past it. You must work very very hard with the speech doctor later. I keep telling you think and now you are repeating it back to me.