The Annual Cleft and Craniofacial Panel Visit.


It’s been a whirlwind of a day. Up and on the road before dawn, and a four-hour long appointment with the Cleft and Craniofacial Panel at UC Davis for Chance and Lilly. It’s a lot of sitting in a tiny room while a revolving door of clinicians come through and do exams, take histories and do a lot of poking and prodding.

We do one of these every 1-2 years and today was one of the better ones, despite Chance asking “are we done yet?” every five seconds until I caved and let him watch Nick Jr. on my phone. Lilly was a rock star the whole time, a huge difference from a few years ago when, as one of the paediatricians remembered, “she hid under everything she could hide under to avoid me!”

Chance got a larger size trach, in the hopes that it will help with his sleep apnea by opening his airway a bit. He is now asleep in my bed, hooked up to his pulse ox machine so I can keep a good eye on him tonight to see how the new trach does.

His testicles have also descended, which is really good news. There was a prospect of surgery, but now it looks like it won’t be necessary. Now we can go full steam ahead with potty training this summer. I had been putting it off, thinking that if he needed surgery, he would just have a setback anyway.

Both kids have multiple orthodontia and dental issues. Lilly has teeth growing where there shouldn’t be teeth growing, and Chance has a molar coming in sideways and extremely crowded teeth. Both will need surgical intervention and braces somewhere down the line.

Both also had hearing tests and Lilly is going to attempt to wear her bone conduction hearing aids again. Chance was uncooperative for most of the test. He freaked out when they tried to put headphones on him, and it went downhill from there. Results for him were inconclusive, but he hears well enough to function at home and at school so they weren’t overly concernedĀ about it. They are hoping in a year or two he will have matured enough to let them do all the testing.

And after all that, Chance lost his second bottom tooth sometime tonight, and we have no clue where it is.

Now I need a couple of days to recoup from the craziness!

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