Seattle V.2

Well after a very long night we made it in one piece, at least physically! We arrived at 7:45 this morning and had just enough time to eat breakfast, take showers, and head over to Childrens for her first meeting at noon. Needless to say it was a very, very long morning/afternoon/evening. She's been so good but man, so tired. She has not wanted to walk at all and ate very little breakfast and lunch to make things worse.

So here's the good news, we met Dr. Haun here and he was so kind, patient, and attentive to our concerns! The appointment lasted 2 hours and he was very i depth in his explanations to us and it went rather smoothly 'cause Alana lasted through vitals and then she was out like a light! He tried to get her to wake up but she wouldn't so he let her be while we went over her history and progression. Here's the sum up of our appointment and what the plan is:

• He did say that she has a multiorgan disease and this is evident by the lung, GI, muscle, neurological changes.
• She is having the muscle biopsy for sure and we will find out the solid facts on the time tomorrow afternoon.
• When those results come in, he estimates 2-3 months, she needs to have a brain MRI to see if something is going wrong that would account for the coordination, emotional delay.
• She needs to have an EEG to look for seizures.
• He said she has things that are mitochondrial in nature but lab work that is immune in nature so there's still no clearly defined etiology for her.
• We need to get in touch with GI as soon as we get home to discuss her GI system, the tube issue, and really look at her caloric intake.
  
• He is going to help us! He told Alana that he'd help "make her better" and that he "loved to hear her voice" and all of this made her smile, smile, smile!
  

She did end up waking up the last 15 minutes of the appointment and he did the physical portion of it. While she was sleeping she turned beet red on her hands and feet, eyes were terribly blood shot, she was shivering even though it was HOT in there, and she was saying her legs hurt her a lot. All of these things are not unusual in anyway but it was something I think is important for DOCTORS to see with their own eyes.




So it was a long day and tomorrow is going to be just as long. At 9 we are going to the zoo to meet with some friends before her appointment with the surgeon and GA clinic. She wants to go look at the space needle and seeing as we are 2 blocks from it I told her we could go over there tomorrow night after we get back and see how she's doing. She's so whipped that I she's been falling asleep every 10 minutes today and it got so back that she dozed while I was getting ready in the bathroom, fell backwards and hit her head on the tub. She's now got a goose egg to show for it! Agh!



I will do another update after tomorrows appointment 'cause that's when we get our surgery information. Much love everyone.