Sunday, May 3, 2009

From April 27th

I guess the neurologists want to drain fluid from Harley's brain today. I don't know why or when, but I'm going to get off work as soon as I can (hopefully in an hour if my co-worker calls me back) and run down there. My husband couldn't understand the neurologist very well (his accent) and he just stopped him in the hallway and said it'd be sometime today. He's not going to sign the papers and let them do it with out me there, just tell them to come back later.
More discouraging news: she went in for an MRI Saturday and the results were that her brain shrunk a little bit more. Only a little, but still... Since she's been awake, doing therapy and is alert, shouldn't she be getting better instead of worse? I just don't understand it and it's SO frustrating having to work and not be there to know ALL of what's going on. I have so many questions and there are limited people who can answer them for me. My mom's having the doctors set up a meeting with me and all of them to discuss what's going on since I haven't been there. Hopefully that will help.
Other than that, Harley's been doing good. Her chicken pox look so much better and they're scabbing over nicely. I've noticed her arms can extend more now and she can open her hands, which is very promising! She seems to be more tired now, not really wanting to open her eyes much. It may be from med changes or being tired from therapy, so I'm not too worried.
That's it for now. Wish us luck and please pray if that's what you believe. Thanks so much for all the on-going support and love!!!

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