"A team" try outs...

So tonight is our last night here in Seattle and I am happy to be heading home. I really miss Noelani and Shaylin and want to get back to our regular pace, crazy.

All last night she was alarming in the mid 80's with her saturation and heart rate (low) but once we got her O2 turned up we all slept soundly and comfortably. It was nice to not wake up until 8 am! When she did wake up though she had another fever and said that her leg felt stiff. Gave her some Tylenol and that seemed to help after awhile. I've given up trying to figure out what her highs and lows are from or even when they are coming. Well, at least for today I've stopped trying to figure it out. =)

She's having some major GI problems today & tonight and I don't know if it's being increased by the stress on her body right now or what but she's been very uncomfortable all day today.

Even though we are going on home the fun never ends 'round here. On Wed. she meets with the immunologist and allergist again to go over this appointment, the fact that her new diet hasn't helped her GI system, her growth, etc. On Thursday she meets with her ped. to go over this appointment (round 2) and talk about her growth and the calorie log we are going to start doing in order to try and figure out what is going on with her growth, or lack of it. Friday she has an appointment with the eye doc to make sure she's not having any inflammation in her eyes and just a good eye check. Lots and lots going on of course.

Well as we get ready to leave Seattle behind again I can say that it's been a good trip. We met a wonderful new doctor to try out for the "A team", we saw Linda and Jacob (yea!), even though her surgery had problems it was nothing we couldn't manage, and the best part, we get to go home with the promises of help in the future in regards to trying to find a diagnosis. I know we've been there, done that (about getting a diagnosis from a new doc) but if I lose faith that someday someone will come through with that, then I think I will have failed Alana on so many levels.