Today was a good day, but exhausting too.
Zak had clinic at Gillette so it was fun for Callie to have a visitor that she normally does not get to have while in the hospital there. Chris and I played a juggling act between the two kids to make sure we did not miss any doctors. We did have a little extra help as Grandma Kathy came with to visit and help out along with Zak's nurse Jen.
We got some good information on Zak. He does have scoliosis, which we have been watching for a bit but just started to see an orthopedic surgeon. He will have to be watched a bit closer as he as a 29% curvature. At 30% he gets a fancy brace. We go back in 4 month to see where he is at and know that it is just a matter of time. In the long term (several years) he will need to have back surgery to fix it but thankfully we are not there yet. Also he had botox done again in his legs. This helps relax his muscle tone and makes it easier for walking. He did such and great job and was quite the trooper!
We also got lots of answers on Callie. I will do my best to explain this. We don't know if Callie had a seizure or not for sure, but the guess is probably yes. Then then next question is why and we are still sorting through that. A few thoughts - 1) infection. This would actually be the best since it would hopefully just be an isolated incident and she is already being treated. 2) Possibly all the trauma her head has gone through or 3) it is very common for kids with chromosome abnormalities to have a seizure disorder and this just may be the start. Obviously we are hoping it is not number 3. As test results come back on her cultures that may give us some answer. Next we met with Neuro surgeon and he said her next where the spinal cord comes down is tight and in time would need to be fixed. They opened it up last year however she formed some scar tissue and just did not heal as well as he would have liked to see. Also, they need to get her shunt out of her head as it just keeps getting infected. He would like to move it to her spine, however before he does that he wants her neck fixed. So she will be having neck surgery for Chiari malformation on Friday and a new shunt placed next week.
All in all Callie is looking and doing pretty good considering all her trauma her body has gone through. Chris and I are holding up.. just tired. Hoping to be home next week if all goes as planned.