Friday, March 21, 2014

Cleft Update

We recently went to Jax's cleft clinic appointment in Lowell. And once again, can I just say how amazing it is that Arkansas Children's Hospital would come up here to Lowell and do clinics so that all sorts of folks that need them don't have to drive to LR. They deserve a slow clap. I mean it, their amazing.

But this was slightly a bittersweet appointment for several reasons, #1 being I though I'd be talking two cleft kids with me (which a story I'm not free to tell on here, but come sit on the honestycouch and I can tell you that whole blessed story) and #2 being that it was our first checkup appointment without Nurse Emily. (We love you Em!)

But throughout this morning (cleft appointments can take as long as 3-4 hours) each person that he saw, knew about him and would take a picture of him and text it to Emily. So she was bombarded with cuteness all morning and it ALMOST felt like she was there because everyone knew how much she would have wanted to see him.

They have a brand new Audiology booth (that not a technical term) and this is the very first time that Jax has willingly and successfully worn the headphones and passed the hearing test. Not that he's failed a hearing test, mind you, we could just never get him to pass it while wearing the headphones, which is key. I was really proud. Not to mention that the audiologist is Emily's best friend, so there's that.

Jax lost his first tooth on Christmas eve, which was huge news (OMG, why haven't you blogged about this sooner, you're wondering…not) and soon after, I think by new years, he'd lost two more. Well, to a cleft mom, this is scary. Especially to a  mom, whose cleft kid  has already had dental surgery this year because apparently Jax's teeth aren't of great quality, most likely due to malformation just like the cleft. So, I thinking (while simultaneously emailing Emily) that all his teeth are going to fall out before he's even 5 and that something is terribly wrong.

But after this nurse talked to this doctor and this doctor talked to this dentist and they all looked at the x-rays, they thought everything looked normal and he just had big adult teeth busting through and it would just be crowded. Whew! I could now left out the breath I'd been holding since Christmas.
In the process we did learn that he is missing three adult teeth on the top, one on the cleft side and two on the other. This is typical for a cleft kid to have either too many teeth or not enough, so this was not alarming, just good to know.

There are so many things that you can't know when it comes to cleft kids, and so the things that you CAN know, feel like gold treasure.

 Jax got his baby teeth really early and so we should have expected them to fall out early, but we didn't. What can I say, its been a busy few years. Teeth weren't really on my radar. But I am grateful that he seems to have his momma's big, strong teeth coming in for adult teeth. They are definitely too big for his little mouth and it will be a jumbled mess for a while but I'm glad they seem to be healthier than his baby teeth. I always hated my teeth, but I'd rather him have my teeth than be stuck with bad quality along with all the rest of the issues he'll grow up dealing with about his mouth.

Because his teeth are starting to come out early, this may push up the timeline of his next surgery. They originally told us that between the age of 7 and 10, he would have a bone graft from his hip to his gum line to complete the cleft in his gum line, but they don't do that until all his baby teeth have fallen out. So, even though I was freaking out for a few days (maybe more…I'm not saying) it is just another one of God's amazing provisions and perfect timing in Jax's life. Lucia, his nurse, did say that probably somewhere in his fifth year, that Jax would go to Little Rock and meet with his whole cleft team and that's when they'll decide about when the bone graft will be scheduled (hypothetically).

Jax is about to turn 5 in a little less than a month, which is incredible. He is funny and so smart, he's the best big brother and he the most handsome guy I know. He's a testament to God's grace and brilliance and sovereignty and I am honored that God chose me to be his momma. Like I said, there's so much you can't know, but I do know that God always knew I'd be a cleft momma and that feels like treasure in my heart.

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