Monday, May 11, 2009

New Update

The neurologist came in on Friday and told us the muscle biopsy results came back and she does have Alpers Syndrome. I asked them about her expected life span and he said it depends on what we want for her. We can either keep doing all this, as in taking Harley into the hospital everytime she has a seizure that won't stop and putting her in a coma on life support, etc. etc. Or, the dreaded option, just letting her go. The first one could go on for about 3 years or so, the first one would probably be months. We haven't signed a DNR yet, aren't really planning on it anytime soon. We're just sturggling with the decision of what to do.
Another big decision is where she's going once she's released from the hospital. We can take her home (we're kind of scared to do that) or to a group home or even a 'halfway' home. The 'halfway' home (which is probably where we'll go) is for people who get discharged, but aren't quite ready to go home (like if you're in a wheel chair, but live on the 2nd floor with no elevators) or need more experience with the medical equipment you're getting sent home with, or if you don't know if you can go home or need a skilled nursing facility (group home). We're going to go 'tour' them and make a decision sometime this week, maybe.
Other than all that bad news, Harley seems to be doing okay. On Mother's Day, Harley and I hung out at the hospital and I spent alot of time just holding her and talking and singing to her. She seemed to really like that, even tried to smile! (I think.) I enjoyed just having Harley and spending time with her while I still can. Cameron got me a purple frosted cake that said 'Happy Mother's Day Katie!' (honestly I still haven't eaten any of it- brought it to my mom's house, though and I'll have some at lunch). My mom and dad gave me a beautiful January birthstone pendant of a girl (gold with a CZ head and the [garnet, I believe] birthstone in a triangle for her dress and gold 'beads' linked together for arms and legs) and a thick gold chain. I have a whole necklace with my family on it, but my mom wanted me to have one just for Harley for Mom's Day. It's really beautiful, I love it!

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