Change is Coming

So...the sleep study went well. He had (at least) 2 seizures while the EEG was going. I heard the doc say that it looked like the seizures started in his right brain, but then moved to both the right and left, then the left side faded out and the right side would be the last to fade out. I also heard him say "..well that doesn't tell us much.." so I'm hoping with further studying of the EEG results, he will be able to pinpoint where the seizures are coming from.

Since the time got so screwed up that day, the doctor thought we weren't going in so he didn't bring the blood test results that measured the phenobarb levels. And of course, he couldn't remember the results, so he still hasn't switched him to another medicine yet. And I called the nurse for the follow up appointment today and still haven't heard back yet (go figure). So until then, we're having to ride the phenobarb out. :(

I swear, when you have an awesome doctor, you always have a shitty nurse or vice versa. This new doc gave me his email address and actually emailed me back. He also apologized profusely about the time mix up with the hospital and told me that the video I sent him was extremely helpful, and yet his nurse won't even return my phone calls.

This morning we had occupational therapy in Metairie. As soon as I got Lucas out of the stroller, he started screaming, swatting at my face and throwing himself around like a fish out of water. He got so worked up and would only calm down when he was lying on his back. He wouldn't even sit up. In fact, he screamed so much, I finally picked him up and he instantly went to sleep!! We're gonna give it a couple more tries before we change the time because I'm really hoping that the key is changing the medicine and getting rid of those seizures!

So today we had our follow up appointment with the geneticist. This visit actually went very well for a change. He said he is extremely happy with Lucas' physical appearance--he's a little tall for his age (no, I'm not kidding), but his weight is perfect and he is very alert! I told him about my concerns that his physical abilities may be regressing a bit, but he told me not to worry about that just yet. That sometimes after surgery, a child will regress a bit, and since even "normal" children do this sometimes, special needs children can be affected even worse by surgery. I also told him about my concerns that the phenobarb is affecting this and causing him to have extreme behavior, and he actually told me that he things it's great that Lucas is having temper tantrums. That this means he's trying to communicate with us and just gets very frustrated and will start these tantrums to get our attention, or so he can communicate to us what he wants. He says they may be worse that the average child's tantrums until he can communicate with us--either by speaking or signing. So people, send me your pictures so I can make that book already. Or I'll video tape a tantrum every day and post it on here.