July 31, 2010

NYU Hospital: Day 1

Today we checked into NYU Hospital for several days of video EEG (VEEG) monitoring. Hopefully we'll get a better handle on the increased seizures Evan's been having. We are also hoping to reduce Evan's meds. He currently gets medication six times a day and is taking way too many pills every day:

Evan was not happy about having the EEG leads glued to his head but getting unlimited time to play his DS is a plus. We think he looks like a sailor in his fancy EEG cap.

Tonight is my night to spend the night in the hospital and it's always an adjustment being here. There is a child crying in the next room, the little girl in the room with us is coughing as she recovers from surgery on her lung and I'm sharing a twin bed with Evan -- which is much preferred to the foldout chair a lot of parents sleep on!

Tomorrow morning they will draw blood to check medication levels and I'm hoping for the best on that experience. All in all everyone is in pretty good spirits and we're one day closer to coming home.

July 20, 2010

The Tracks of My Tears

So I'm a complete dork, in case you don't already know that, and was all teary driving into work today listening to Smokey Robinson on the radio...

People say I'm the life of the party
Because I tell a joke or two
Although I might be laughing loud and hearty
Deep inside I'm blue
So take a good look at my face
You'll see my smile looks out of place
If you look closer, it's easy to trace
The tracks of my tears...

So of course the rest of this is a break up song but we have had a rough couple days with Evan and the beginning of the song sort of fit how I was feeling.

On Monday Evan had another pretty bad seizure and today he had a bad toxic reaction to his medication so it's been a bit of a roller coaster. It seems like every week we are adjusting his medicine up or down or adding in something new. Evan is completely unfazed by all of it so we really have to follow his lead, but it isn't always easy.