6 days...

We had 6 days. Today Nathan had his first sz in 6 days. It came out of the blue. We were sitting on the couch playing with the camera in my phone, he was extremely lucid... and then it hit. By the time I ran to the refrigerator to get the magnet (in an attempt to swipe his VNS) he was out of it. Then a few minutes later, he was asleep on the couch.

Yesterday, I saw a few arm twitches, this morning a few as well. But, emotionally and cognitively, we've still had good days.

I googled felbatol for side effects. Constipation is one, which I figured. Nathan has been constipated since probably Thursday or Friday. I know that's contributing, at least I'm sure it is. I've been trying to push this magnesium mix I normally only give him at night. I'm thinking another side effect might be the way things taste because he's having no part of that drink and he used to drink it just fine. I need to find something to get his bowels moving though, it's going to get painful soon. Poor baby.

I'm upset, but not as devastated as I thought I would be. I kind of felt it coming. And, my boss said something to me that made a lot of sense. She said, "you've been on quite a roller coaster for a while. You've certainly felt and experienced the lows. You need to enjoy this high. And, if it goes bad again, we'll be here to help you through it".

I have thoroughly enjoyed this week. I have no intention of giving up this fight now - now that we've gained some ground.