Reuben

After a pretty good week for Reuben (until today, he'd only had one seizure), he's been having a rough day. I just got an email from Matt, and halfway through the day Reu's already had six seizures. He typically averages, over the course of a month, one per day. The most he's ever had in a day is eleven. I think eight was the runner up. That means with 12 hours left of this day, he's potentially gearing up for one of his roughest days since the seizures started three years ago.

Using Dondi's phone I've been able to facetime a few times this week. This morning was the second time with all three kids, and midway through the call I saw a seizure hit. I called for Matt who was right there to be with him through it, but as many times as we've seen him go through that - hundreds of seizures - it was tough to see it and not be there with him through it.

For those of you who pray, would you ask God for the mercy of holding that little boy's brain steady? He has only once been hospitalized because of seizures (and that was largely because of the unknowns at the time of his initial diagnosis), but it's always a possibility. His chromosomal abnormality (ring (20) chromosome syndrome) is characterized partly by difficult to manage seizures that gradually tend to worsen over time. His normals are always a moving target, and a string of seizures like this always heightens our awareness of the possibility of something escalating beyond what we are able to manage on our own.

I'm ready to be back home. :)