Getting back to posting...

So... it's been since November that I've posted. Wow. I guess I got a little distracted. I've been quite stressed out lately and so I thought I should get back to venting.

Since November, we've plateaued with Nathan's healing. He has good days and bad days but isn't really making true progress like he did initially after the huge reduction in his sz's.

We went in the hospital this past week for an overnight EEG and neuropsych eval. We learned that Nathan's still having some activity during the day. As far as I know, there was no nighttime activity. Since September, we'd had two daytime EEG's that showed NO sz activity. We'd been functioning on the assumption that he wasn't having any sz activity at all. Unfortunately, we learned that that wasn't quite the case. The silver lining in that is that we now know it and can address it. So, we're increasing his felbatol 1cc each dose. That began friday afternoon. Today, I witnessed Nathan pretend playing with 4 action figures from Sponge Bob. I cannot ever recall seeing him do that before. Coincidence??? I'm not getting myself all worked up over this. I just can't.

The neuro psych eval really kind of hit me with a huge dose of reality. I realized I've been watching Nathan expecting him to return to "normal" now that we'd gotten sz control. What I realized is this IS Nathan's normal - what normal is for him now anyway. There is no time machine. We can't go back and undo what's been done to his brain. We can try to heal him though. But the place we get him to when he's fully healed (if that happens) will be a totally different place than where he would have been had this never happened to him.

Sounds simple enough, but that concept had never occurred to me. I was trying to get Nathan back to who he was supposed to be, not focusing on who he can become.