A Quick Hello

Greetings from the Ronald McDonald House in Detroit.

We arrived just around midnight last night (9:00pm our time), and were met at the airport by another mom who I met through an online support group for children with Infantile Spasms. Her daughter is also here for the same tests as Jordan, and I just can't thank her enough for the trip to the airport in the middle of the night to get us.

Our flights were interesting, but that's a whole different story (for later). I arrived with just about enough to make my first load of laundry, thanks to Jordan's barfing and pooping. Good thing they have laundry facilities here.

We got to our room about 1:00am, got settled in, then layed around in bed & snuggled & read until ~3:30, when Jordan finally went to sleep. It was a short 3 hours -- up at 6:30 to start the big day. First was the EEG, boy does Jordan LOVE to get those things hooked up to her head (not). Then a blood draw, followed by injection of the radioactive glucose tracer that will show how her brain is working. This was Jordan's 5th EEG, and the first time they bundled her up and taped her down to do it. She fell asleep about 10 minutes into it (with the help of my thumb), and remained asleep for the next 20 minutes to complete the test. Then the nurse asked me if she thought Jordan would sleep through the PET scan (30 minutes). If not, and she woke up and moved, they'd have to start all over again. I said I thought she would sleep, but not wanting to risk it, I agreed to let her have a half dose of chloral hydrate. She slept alright -- for 5 HOURS. She slept so long they had to move us to a recovery room. She was all hooked up and monitored, and was doing just fine, just sawing logs. I got a couple little naps on the beds in the room, then finally around 2:30pm she woke up! The anesthesiologist was not concerned, she figured it was a combo of the chloral hydrate, the time change, the lack of food, the wrestling while getting the EEG put in place, etc. If only she had woken up briefly, then we could have gone back to the RMH and both got a good afternoon's sleep. Oh well, that's overwith.

The lab techs report that the tests went well -- in that they were able to collect usable data from them. We won't know anything about the results until Friday afternoon when we meet with Dr. Chugani. I'm pretty scared about what he'll say, and I really have no expectation of him being able to make a diagnosis with this information. It's just more data to throw into the pot, but he'll definitely know if things are BAD (i.e. take her home and love her, which is what we do anyway). I guess he can't tell us anything we haven't heard before, but it seems like we've been so caught up with the treatment part of her life for the last couple of months that we I've lost sight of the diagnosis part.

Students from the University of Michigan came to the RMH tonight and cooked everyone dinner. Chicken Parmesan, salad, rolls, dessert. It was so nice to just sit back and visit with some of the other parents and children. There are so many battles to be fought & lessons to be learned, but most importantly kids to be loved.

On the agenda for tomorrow: 24 hour video EEG. It doesn't start until the afternoon, though, so we'll have the morning to hang out. The hospital/university is far away from everything here in Detroit, so we'll just be sticking close by. Once we check in for the VEEG I won't be allowed to leave the room -- I have to b there to hit the button and annotate in case she has a seizure. I'm also not allowed to fall asleep. Well, that shouldn't be a problem through the night. Luckily she doesn't have many seizures these days.

Anyway, it was a busy, exciting, exhausting day, and I think that both of us will sleep a little better tonight (how much worse can it be than 4:00am, right?).

I've taken lots of pics, and will share them soon.