Thursday, July 2, 2009

Caitlin's MRI Followup (Finally, a post!)

Yesterday we made the trek back into LA to go visit everybody's favorite Neurologist, Dr. Moise Danielpour with Cedars Sinai. It was kind of a long drive since we forgot to put the DVD player back in the car for Caitlin, but thanks to grandma in the back seat (who tagged along to help) we managed to survive the trip. West LA traffic sucked as always, of course, so we were barely pulling into the parking structure at 2:30, which was when our appointment was supposed to start. This timing turned out to be fortuitous, though, as another family with a two year old achon boy showed up just a few minutes after we did - a family who knew nothing about the LPA and had never seen another little person before! They were from the LA area as well, so Cherylle immediately stepped in and acted in her role as parent coordinator for the LA Chapter and introduced us and Caitlin. They were very excited to see Caitlin running around the waiting room, and seemed relieved to see how well she was doing. Cherylle gave them our info - hopefully they'll be back in touch with us soon!

Anyway, we got in fairly quickly to see Dr. Danielpour. His nurse did a great job "measuring" mommy and daddy's heads first so she could get Caitlin to put up with her head being measured - and there's no change, which is good. She's growing, but her head isn't at the moment. On the other hand, Dr. Danielpour was a bit concerned still with the fact that her fontanelle was still wide open, the fact that her forehead bossing is as pronounced as it is, and that she has prominent veins in her forehead. He told us that her MRI scans showed basically exactly what he was expecting given her characteristics - at full flexion her spinal fluid was completely blocked from flowing, and at full extension there were no problems at all. This also made sense when you combine it with the results of her previous sleep study, which showed more apnea episodes when she was sleeping on her back, which pushed her chin forward onto her chest, than on her stomach, which allowed her to turn her head to one side and prop it up.

Basically, the upshot is that we need to do another sleep study on Caitlin to verify whether or not she is having problems with central sleep apnea, then come back and talk to Dr. Danielpour again about the possibility of decompression surgery. If she doesn't have any central apnea problems, then we probably won't need to worry about it - but if she does, then decompression will probably be necessary. Of course, with all our insurance changes over the summer (me being off for the summer, and Cherylle getting a new job) getting the sleep study scheduled might be a big challenge - but we'll do what we can to get something on the books! Our schedule is complicated further by the NY conference - we leave Saturday and don't come back until the 15th! As if there wasn't enough going on, right?

On that topic - we're excited to see many of you in NY - and for those who can't make it, we'll see you on Facebook!