Cycling

I finally got up the nerve to try riding with John. Of course he loves it, and wants to go every day. I still worry about him having a seizure while riding or trying to jump off while we're moving. So far, he has been OK, though. He hasn't learned to pedal yet, but we're working on it. He likes to stand on the pedals and try to grab things as we go past, which of course makes the whole thing quite unstable. So, we keep it real slow.




For some reason, he really wants to ride Yoshie's bike. Of course it is way too big for him, but he still loves to have me push him around on it. He won't ride his little bike anymore. We'll have to get training wheels for Maya's bike and see if he'll ride that one.

First day of school

I'm a little late posting about John's school, but here he is on his first day of first grade. This was also Maya's first day of fourth grade:



John takes the bus for about 30 minutes each way. Here he is looking a little nervous on his first day:




So far, school has gone pretty well. At least we haven't been called to pick him up yet. :)
I think he's a handful for them, especially on the playground. The teacher has been really good about keeping us up to date with what he does each day. I stopped by the school one day when we forgot to give him his morning medicine and he looked happy.
He is getting a little too comfortable on the bus, and they have had to use the harness seatbelt to keep him in his seat. I don't like that, but safety first I guess.

Done with Felbatol

On Aug. 27, we gave John his last dose of Felbatol. So, it's been almost a month now, and we didn't really see much change. He still has seizures every day. Some days we see just a few, other days we see a hundred or more. But, these are still all the brief myoclonics and haven't progressed any further. John is currently only taking 1.2ml of Keppra twice a day. We see the neurologist again next week. I'm guessing we'll increase the Keppra, or change the VNS settings to try to reduce the myoclonics that he is having.