Speaking of Seattle...

First off let me say how much I really, really like Dr. Hahn over there at biochemical genetics in Seattle. I called and left a message for his nurse this morning to see if the results of the Muckle-Wells and Familial dysautonomia gene testing (and was going to throw in there they whole, hey...any word on the mitochondrial testing lol) where back but no more then 45 minutes later HE calls back and goes over the results with me. He is high on my top 5 doctors that have tried to help Alana!


So onto the results though, and no answers here, both came back negative so we are just waiting on the mito testing. He said that he has been thinking about her and what else he could check for but was at a loss. She's had such extensive workup's and from a metabolic stand point, aside from the mito, there was nothing else at this time he can think to check her for, again, not sure how to feel about that. He promised to call as soon as the mito testing came back and he's anticipating that being some time in August. I really hope so and I don't even know what I am hoping for, yes or no.


Today's PT session sucked, as have the last 2 weeks. She's crying all the time, dropping her SATs at a ridiculous rate even with her O2 on, literally falling asleep in the pool or crying and refusing to participate. Tomorrow morning's session is cancelled and I hope that she will feel better for the next session but it's so frustrating right now. She's got some crazy rash that I've never seen before, she's sleeping from 4-5 pm until 9-10 am and still tired, eating well for 1 meal then nothing for the rest of the day and just so very pale. I don't want it to be mito but I don't want this to be another dead end and have no idea what is going to go wrong next. Her HR is so crazy and erratic right now as is her GI system that whatever "this" is is taking a toll on her in so many ways.She feel asleep right when we got home (3:45) and we just woke her up (7:15) to eat some dinner and she's picking at it so that's good hopefully she will manage to get some of that in her mouth.


No pictures today, sorry. Just didn't have time and honestly, she looks no better then the last one so we are going to go on a trip through memory lane...enjoy.