Monday, October 29, 2007

VNS is almost dead

John had a neurologist appt. on Thursday. We had his VNS checked and it is almost dead. He said that it likely isn't even giving the full charge right now. So, we have to decide whether to replace it or not. Since John is doing so well right now, we are going to hold off on replacing it. If the seizures come back, we will have it replaced quickly. We're hoping to hold off until the new version of the VNS comes out. It is much smaller, and has more features. It should be available in the next 6 months.
The neurologist is very concerned about John's inability to concentrate on anything. He kept trying to blame the Keppra, but I kept reminding him that John was already like that before the Keppra. I really don't want to decrease John's Keppra dose, as this drug has worked miraculously for him. We might go down on the Felbatol just a little, but he didn't think that would make much difference.
We talked about John's Pica (craving ice and other strange things). He agreed to have John's iron levels checked again, though we're not expected to see any thing out of the ordinary.
John had to have quite a bit of blood taken for all of the tests. It left him pretty worn out. And, we saw a little head-drop in the evening. So, I guess the seizure-free streak is over. But, that can barely be considered a seizure, and we haven't seen anything since, so all is well.
Finally, John has to have another EEG on Thursday. He hates those things. I really hope that we will see some improvement, but honestly I don't think we will.

Wednesday, October 03, 2007

John Climbing

I haven't updated in awhile. This time no news is good news. It's now been over 4 months since we've seen a seizure. It's kind of amazing really.


He's been making some progress with his speech, but it sure doesn't come easy.


Kindergarten is going OK. He was sick for quite a bit of the first few weeks so he missed a lot of school. But, he's fine now and seems to do OK. We really don't know what goes on at school, but the teachers tell us he's fine, and he seems happy when he gets off the bus in the afternoon.


He continues to climb everything. Here is his latest trick:






We also added to his climbing wall. He uses this all day every day: