S.'s cranium

S. had a big day at the children's hospital last week. I was all set to go, and when I woke up at 4:30 am, it was pouring rain. I was exhausted. I was dreading the two hour drive and long appointments. My sweet husband stepped in and volunteered to go instead. I was a bit nervous about having him go, just because I have always been the one there. I didn't want to be left out of the discussions or plans for S! But it was all ok. S. did great with the anesthesia. He slept a long time after the MRI, but was not fussy when waking.

The craniofacial team (two surgeons) saw S. and were running on time! The plastic surgeon came in first, and answered some questions and concerns we had about S. He will wait until next year to do the big reconstructive surgery on S's eye sockets and nose. This will also include a bone graft. Ouch.

Next the neurosurgeon came in, who said S's brain looks great. His shunt is working well, and his chiari has not changed. We are supposed to continue looking for symptoms from the chiari malformation. He will be present at the big surgery since it will be involving brain tissue.

There was some concern about S's eye. One doesn't drain due to his deformity and there is always eye crust and tears running down his checks. (even when he hasn't been crying) They are referring him to ophthalmology to do some tests and see if there is anything they can do to help.