All Things Known

We had a follow up visit with Tommy's neurologist on Friday. It was a lovely day to be in the city, with the weather cool but certainly warmer than normal. We arrived early and walked to a pizza place less than a mile away from the children's hospital and Tommy had his first Chicago style pizza. I'm pleased to say that he recognized the culinary delight that is deep dish pizza and at any given moment, had cheese dangling from his mouth and sauce covering his hands.


Still, these visits are tiring in that I never thought we'd be making them. But it's all good news and well, we like good. We're doing a few things to treat/manage his seizures and so far, they seem to be working. The doctor immediately said how we had much more color in our faces than last time and how some of the exhaustion has been washed away. It's so funny, you think you're maintaining and putting on a brave face, but sometimes you just can't. She said that last time, it was like we were at the top of the terror alert scale, but now we've gone down a color. And seriously, I wanted to hug her simply for sharing my love of analogies. His EKG was completely normal, as we'd suspected it would be. Eventually, we'll do a repeat EEG and then eventually, we'll just wait and count on our fingers the number of years that pass seizure free. I hope.

So, he is doing well and we are doing better every day, but truthfully, I am tired. Just very tired and wish I could sleep for maybe twenty hours or more.