Irish Stew

These are our passports as we are getting ready to go to China (hopefully) soon. Note that there are five. That means that Asher’s finally came through and was mailed to us. Yay! Actually, it came last week right before Ellie’s surgery and I haven’t had a chance to mention it until now. One more thing to check off the list before getting ready to go. The list still seems to be very long; I feel as if I am not making a dent in it. One day, it won’t matter because we won’t have time to complete one more thing. We’ve done this three other times and it still catches me off guard every single time. I will never get it all done. However, it is a good thing that we have the passport snag taken care of.

On another note, I took Caleb to the orthodontist this morning for an appointment as a new patient about his jaw. Being the parent of a cleft-affected child, I knew that orthodontics were in our future. But that’s just it. Future. Not necessarily at 8, going on 9 years old. Yet here we are.

Caleb doesn’t need braces (yet); we actually met for a consult about his upper jaw and his two front teeth. They really had amazing technology in this office…they took a wrap-around x-ray of his head to capture his jaws and teeth from all angles and then had it on this big screen to point out different things to me while we talked. I couldn’t stop looking at it. I could see where his teeth were coming in when they hadn’t erupted yet, where he won’t have teeth (ever) and how the bone of his jaw fit together. Maybe that’s weird, but I thought it was very cool.

When a child is born with a cleft lip and palate, it generally is considered to be either unilateral, where the opening is on one side, or bilateral, where it affects two parts of the lip and palate. Of course, there are other situations, too, but that’s a generalized description. Caleb was born with a bilateral cleft and he had lip repair surgery while he was still in China before we adopted him. When his lip was repaired, it was very tight, such that you pretty much can’t see his top teeth. If you notice his smile, it is always bottom teeth only.

We have always known that his cleft is a complex case: he has a very small mouth, a lip that is very tight, a very high palate, his teeth are in various positions, and he has a fistula (hole) that developed after one of his last surgeries. Brushing his teeth is a challenge. We have met with a number of physicians and surgeons about his mouth because it is complicated. I’ve had one physician tell me that Caleb’s is the most complex mouth he has ever seen. I’ve had another tell me that he could not help us because of the structure of Caleb’s mouth and that our case should be managed through the Mayo Clinic (because, we travel to Rochester, MN all the time, so why not?) (Note: sarcasm).

Anyway, today I was very encouraged because we actually made plans for Caleb and his jaw. By looking through the x-rays, we also discovered—as the orthodontist pointed out—that Caleb doesn’t have much of a bone under his two front teeth. They’re sort of just held in place by the gums. He will most likely need to have his front teeth pulled and have prosthetic teeth placed someday. We are planning to start palate expansion—where there is an arch in the roof of the mouth that slowly pushes the upper jaw apart when you turn it with a key—so that eventually he will have bone graft surgery to fix his upper palate.

Whew! That’s a lot of information. And while I was staring at the x-rays in fascination, I also felt sad. I didn’t want my kid to feel like a specimen. I didn’t want him to feel like a weirdo for something that he cannot help. Last night we were at swimming lessons and he was playing with another kid there who he had just met. I heard the kid say, “what happened to your lip?” and Caleb just responded with, “yeah, that’s just what it looks like. Anyway…” He just brushed it off, partly because he has probably been asked about it a thousand times in his short life.

He is such a good sport. He is a great kid. I see him, almost 9 years old now, and I remember when he was three and four years old and still only speaking in vowels because he had such a hard time getting past the speech difficulties. He has worked so hard and made such great gains because he keeps on trying and doesn’t give up.

I love this kid. He’s a rock star to me.