Back to zero

Feb. 28, 2010

All the way up to Friday of this week I wasn’t sure what I was going to blog about tonight. On Monday, we made contact with our second Central Ohio PMG family, and that was very exciting, but to write a whole entry about that would have infringed on their privacy which I never intend to do in this site. I could have written about the new way they’re trying to get Nathan to focus at school (I still may write about that later,) but on Saturday the decision was made clear, and so here I type, getting everyone up to speed.

Friday was our neurology appointment. It’s supposed to happen every six months, but that would have been in January. It was going to interfere with one of our intensive therapy sessions, and Annette called to cancel only to learn that the office postponed it on their end. We couldn’t be too upset as it wasn’t going to work out for us, but still, it would have been nice to know it was moved. So moving from early January to late February, no big deal. We didn’t have anything to report, or really need changed, it would be fine.

We get to the office only to find out that they think we cancelled. Apparently via the phone at 10p.m. I don’t know how that could be, but the doctor was there and had no problem seeing us. As I said, no big changes, we hadn’t seen any seizures for over a year, just get a refill of the prescription, check in and see if there was anything new, and we were on our way. The only conversation we really had, besides the Olympics, was possibly increasing the daily dose to accommodate for Nathan’s growth, and that was by only adding 0.1ml to the current 1.3ml dosage. But that was Friday, and the topic of this posting wasn’t decided until Saturday.

Saturday was the first day we could all sleep in possibly this whole year. No pressing morning appointments, church groups, food banks, family gatherings, other than cartoons and the Olympics finding motivation to get out of bed wasn’t easy to find. Nathan got up around 8 (which is sleeping in for him) and I didn’t object taking him downstairs so Annette could get more sleep. I put him in his high chair and got him ready for breakfast.

As I was preparing the food I looked up and I saw the all too familiar sight, the arm raise, elbow twitch and corner of his mouth pulse like it was hit with a hockey puck. Our first seizure in over a year. In my head I had the visual of all those workplaces (especially construction) which have the sign "Accident free for over XX days." I could just visualize that sign rolling back to zero.

After that and throughout the day we probably saw 5-6 more. These looked less violent and more calm than the round last year, but still not what we wanted to see, especially the day after seeing the neurologist. Sunday brought on a few more in the morning and then another in the afternoon. I don’t know if it was a seizure or just a combination of bad luck but while was getting his night time bath ready I heard him screaming on our bed. Running in from the bathroom, I saw him lying there with his finger trapped between his teeth. He was only recently starting to put them in there, but once he bit down, he tensed up and would bite harder, causing more pain, more tension and a bad cycle. I got his hand down, and could see the teeth marks, but not the way he would want to end the weekend.

Both the last round of seizures and this time seem to happen when he’s falling or waking from sleep. No one seems to know why sleep would be a trigger, but from what I’ve read from those sharing their experiences with me, we’re not alone. If we could figure that out, as a whole we may get somewhere.

As for us, we’ve got a crazy week ahead of us, running around and trying to fit 25 hours into several days. I know many other have hectic schedules as well. I’m sure Annette will get in contact with our neurologist Monday and see if there’s anything he’ll want us to do other than up the dosage. I’d just like for things to go back to how they were before Saturday and hopefully I’ll be able to talk about school again soon.

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