VEEG -- Wednesday

After a rough night we really had our eyes on the prize – a hard-wired room. Dr. Devinsky came in early and said he was going to push hard for a new room, and that was without us even asking!

His news from Evan's first night of Video EEG observation was that all the seizure activity is coming from one place and he thinks the tuber is on the sensory strip instead of the motor strip. These areas are right next to each other, but if Dr. Devinsky is right, this will be HUGE if we end up looking at surgery. If they remove part of the motor strip, it will leave Evan with a fine motor impairment -- possibly a bum hand, and this part of the brain isn't good at redirecting info. If they remove part of the sensory strip, Evan may not be able to touch his nose with his eyes closed. Neither is optimal but the second option is much more appealing. Dr. Devinsky wants to do a MEG scan next, to more clearly identify exactly where Evan's motor and sensory strips are. They will take his MRI and lay the MEG scan over it to see exactly what's going on.

Our next visit was from Dr. LaJoie who said pretty much the same thing as Dr. Devinsky. She was great and talked with us about adjusting Evan's medications and told us Evan is actually having Simple Partial seizures instead of Complex Partial seizures. I'm not sure it makes much difference in his treatment or case, but it was interesting to learn that.

After Dr. LaJoie left we were moved into the golden hard-wired room. Although the parents in the four-bed room were very nice, we were happy to leave them behind! We moved into a room with another little boy having a VEEG who was a year younger than Evan and the family was super cool. Evan spent the rest of the day plugged into the wall in the playroom for VEEG monitoring. While he was there he made a plant in a horticultural therapy session, played with the train set, attended a birthday party and finished his day off with a rowdy game of Bingo.

Rob spent the night with Evan and I made my way back to Long Island where I was welcomed by all the families we met our first morning there. It was nice to have a warm, inviting place with a comfortable bed to return to!