Journal entry by Barbara Bradley — Nov 25, 2010

Happy Thanksgiving! I know this update comes late. Katie had meds due at 11pm so instead of risking waking her and her not going back to sleep I kept her up.

I got an email today from either Barnes and Noble or Borders with the subject line: Tomorrow is Black Friday – Are you ready? The answer is “yes”.

I was asked permission for Katie to participate in two genetic studies for epilepsy. For one they will take blood and the other they will use a portion of her brain that is removed. And…. I signed consent forms yesterday giving permission for the surgeon to disconnect half of her 3 yr old’s brain. What kind of person does this? The kind of person that is tired of seeing her daughter seize and stop breathing 50 times a day, the kind of person that wants her daughter to learn and develop without being held back from 5 daily seizure medications, the kind of person that is exhausted from staying in fight mode nights on end. Simply, the kind of person that wants to give her daughter a new life.

How are we doing today? That is the million dollar question. It’s been a great day. A local church brought turkey and all the fixings for the pediatric floor. It wasn’t home cooking but I was certainly not complaining. After all, I assumed we would be getting our turkey fix in the hospital cafeteria. Katie had a good day. She was in the best mood since we have been here. We ventured out to her favorite fish tank elevator and then stopped in the main lobby where they had a piano player. She LOVED it. She just watched his fingers glide over the keys and would turn back and smile at us.

We got moved to a different room this morning to the step down unit which is a step down from ICU. She made the nurses nervous in the other hall with all her episodes of not breathing. One of the first things they did over here was replace her IV. The nurse called in another nurse to help. Now Katie has a new crush. Yeah, this kid’s got game! Adorable nurse Rob helps with her IV and talks to her to distract her. She is a savage flirt. He was asking her, “Where are your ears?, Where’s your tongue? “. As he was leaving she pulls the pillow down that is blocking her view watching to see where he went. What am I gonna do with her?

The count down has begun. The seizures I log in her journal tonight are hopefully the final ones. Surgery is on for 7:30 am and they will come get us between 6:00 and 6:30. The surgery is slated to last between 4-5 hours.

I hope everyone had a nice day with their family and was able to take a moment and reflect on what they are thankful for. If you are one of those crazies that shops at 4 am in the morning, please stop and say a little prayer for us.