Saturday, June 13, 2009

Preparation

Reagan went to bed early last night around 9pm, I had just enough time to get all of her medicine in her but not enough time to give the high dose melatonin a try. Maybe tonight. She went all day without taking a nap, just a 5min siesta here and there. We went to church tonight and she was very well behaved. She had actually just fallen asleep right before we picked her up (and woke up as soon as we put her in her carseat). The woman that watches her at church commented on how few seizures she had. Now that I think about it, I guess this was the first time we've been since she started Keppra. That's definitely a good thing when other people notice a difference. It's hard for me because I'm still seeing her have a good amount in the middle of the night and first thing in the morning. Baby steps. Still haven't done any real packing but I did make a dent in the laundry, so that's good. I decided to go ahead and get Reagan one of those hand held DVD players after seeing how mesmerized she was during her gastric emptying scan watching those cartoons. I figured maybe it will help to entertain her on the airplane or while we're cooped up in that room during the 24hr EEG. They sent us a packet in the mail that outlined the expectations for the EEG and I'm not sure I'm up for it. First of all, they want a parent awake at all times (including night) to press the button and write down in a log any "events" she's having. I don't mind pressing the button, but I'm not sure I'm going to jot down all 100+ events. They also say that you can't have a personal computer in the room. I figured we'd spend half our time on the internet, so what now? And how am I supposed to do the blog? I may have to sneak away for that. Any way you look at it, it's going to be a stressful trip and I'm sure we won't relax til we're back home in TX sleeping in our own bed. Only one more day til we leave! Please keep us in your prayers!

5 comments:

Sophie's Story by Elaine said...

I don't know why they say that about personal computers. Dr. Asano (neuro that reads the EEGs) said that we were able to have one as long as we didn't keep it by Sophie's head and where the EEG leads come together and plug into the computer or wall.

Rhea said...

Praying that all goes well!

LizGorman said...

Praying for you guys. I'm hoping that you have a safe trip and get lots of questions answered in Detroit!

jocalyn said...

Bring your computer! My guess is they want to make sure you "catch" the seizure...but in Reagan's case...I doubt if that will be a problem:) During Kendall's last 48hr. VEEG they told us to stop pressing the button and just jot down her clusters.
We're praying for safe travels for you guys and some answers!

Christy said...

I will definitely add you to the prayer list....we'll be thinking about you!
Christy

http://safe-haven-blog.blogspot.com/