The hotel we were staying at in Detroit filled up and I had a hard time getting back on the computer they had in the business center so I am updating this from home.
Evan did really well with the AMT Pet Scan on Friday. This test is the one that will hopefully identify which tuber(s) trigger his seizures. The test was two hours long and he was sedated for it. I was able to stay with him the whole time and Rob took Aria to the Ford factory tour for an outing.
Evan had the best pediatric nurse I've ever encountered and she was amazing to watch. I told her Evan is somewhat phobic about getting his vitals taken and she was able to get everything she needed without Evan fighting her or even crying! She just took her time and got down to his level--she gave him about 20 stickers that he quickly covered himself in and I think that helped break the ice! She also gave him some control and he pushed the blood pressure button. When Evan came out of sedation he was like a drunken soldier, staggering around and falling a lot, but that improved after he got something to eat. We don't have any results yet but are hoping to know more soon.
On Friday night Linda, Claire, Casey and Molly showed up and it was great to have some time to see them and catch up! We spent all day Saturday together and the kids had a blast playing with each other. They interacted so well with each other it was hard to believe they had just met! On Saturday night Linda hung out with all three sleeping children while the rest of us went out for a night of gambling--I thought we were due some good luck, but no big windfalls to report!