I was so excited about this day, that I didn’t need the 5:45 wake up call. I was up long before then. Katie was a trooper and didn’t complain about being woken up at 6:00 am! Then off to the hospital on the shuttle (which I LOVE). If you haven’t seen it, it’s hard to comprehend, but the “Medical Center” is hospital after hospital, blocks and blocks of hospitals and research centers. Boston’s Longwood Area is dwarfed by the magnitude of this area. Texas Children’s Hospital is HUGE! There are three lanes between two buildings for dropping off, like regular lanes on a street!
There’s a row of buttons to make the individual aspects move! There’s the train and carnival buttons and more! Katie spent a few minutes setting off the carnival, ha ha.
Then up we went to the 7th floor, where we were met by quite a few people all very happy to meet Katelin and I think almost as hopeful as me that she would be accepted. It was very clear from the start that everyone involved was excited, happy about and committed to this study, and put us both at ease. The room was very nice and every step of the way I heard “do it however makes her (Katie) most cooperative” so basically they did every test in her purple wheelchair. What a team. So even though she wasn’t quite sure about all of it, by the end, she was at ease and feeling comfortable. The only thing that made her cry was the blood draw. And of course they brought her food, which is always a big step in being her friend, lol
Not too sure about this! Nice room, but NO WAY is she getting in that bed!
This is her “Borg” look.
Always helps to have a guy around. Henry was great. 🙂 Can you believe this means something?!?
It was an emotionally draining day, too, though, as it became apparent that Katelin might be too high functioning for the trial. There was a period of 2-3 hours where it wasn’t looking good. The doctors would come in with updates as to where they were in their discussions, but eventually I got word she wouldn’t be excluded for that. Now it was all down to the testing results. Her EKG came back fine, so that left the EEG and lab work. Only two days to wait!
As we left the building we walked by The Living Wall. I looked at all the names and hoped that one day Katelin’s artwork and name might be there.
A very emotional day to be sure, but now we’re all done and off to the Children’s Museum! (that’s Part II!)