Journal entry by Barbara Bradley — Nov 22, 2010

I survived another day. The total number of seizures climbed to 40 yesterday, and I was so exhausted I know I didn’t catch them all. Since she slept about 16 hours straight from all the seizures and meds, she was up at 4 am this morning. I heard giggling and look up from my sleepy stupor to see her peeking at me from the crib slats.

“Go to sleep, Bug,” I say.
“he he he hee,” she laughs.

I ended up putting on a video for her and was tortured with Dora and Blues Clues for an hour and a half until I just give up on going back to sleep. Everything here beeps and dings, someone is always coming in the room, there is construction going on outside, and we are right by the nurses station which is like getting the hotel room by the ice-maker.

Mid- morning they finally came to get us for her MRI. By the way, she has these ridiculous plastic looking jeweled markers glued to her head which are needed for the MRI and will remain until surgery. They are supposed to work with a wand and computer screen to allow for a 3D picture of the brain as they operate. Science and medicine are cool. Around the nodules they drew with a sharpie in case they fall off between now and Friday. The jewels along with the rash on her face make for one pathetic looking little girl.

Today is a week we have been here and rooms are starting to empty with new children arriving. The staff has written “Happy Holidays” on all the windows of the rooms. I am learning all the nurses and doctors. Mary brings the food trays and tells you “It’s hot, sweetie!” everytime she puts the tray down. I know they don’t serve pancakes in the cafeteria on the weekend (this should be a crime). I know where the stash of popscicles and tiny cups of icecream hide. Every day right at 1pm they announce over the loud speaker that it’s quiet time which is ironic, isn’t it?

Of course, the most important update is we learned the surgery time is 7:30am Friday. Just a few more days and then new challenges will present themselves with recovery. One day at a time.