Aly went to bed at 8:30 tonight. I find myself wasting time on nothing good. Started to watch tv, nothing good there on Friday nights. Thought about pulling my scrapbooking stuff out, but then decided I didn't feel like doing that much work. Lazy, but yet I want something to do! Got on Facebook, another waste of time and then Kevin Skyped in. We chatted for awhile. We both have our frustrations to deal with. He's trying to get Make a Wish to get a move on. We are sadly disappointed with that program. It seems that they should make it as easy as possible on a family going through such h-e-double hockey sticks, but instead it is as if we are doing all the work. We are about ready to tell them to forget it, but we don't want to disappoint Aly, yet again. I have a couple of other frustrations in the same, I shouldn't have to do all this, category. You'd think that when it was confirmed that we were on our way to Florida, that all the paperwork necessary to get a tutor lined up here, would've been done. The social work people here, just started the paperwork this past week, so we have yet to have anything started. We were also looking for a possible flute teacher and I am the one having to contact people through calls and emails. I just feel like by the time we get things set up, it will be time to go home. I also fear that Aly is not going to feel good enough to do much now. These treatments are making her really tired. It takes us about 20 minutes to get home, and by the time we get here all she wants to do is sleep. They suggested we give her benadryl to help her relax during the treatments. I'm not sure if it is that, or the treatments or a combination, but she has fallen asleep every day. I've had to wake her to eat dinner, which she doesn't want to do, then she wants to go to bed early. We were having so much fun. Last week she had mentioned this was like, "the summer we never had." We were doing the things she's wanted to do all summer but hasn't felt well enough to do. She had also been eating really well. I mean, REALLY well. She weighed in at 61.5 pounds on Wednesday. She has never been 61.5 pounds. The last time she left the hospital she was 53 pounds and not wanting to eat. We were giddy that she put on that weight. Now, these last couple of days, she's back to not wanting to eat. Oh, I hate that everytime she's back to feeling good and more like the Aly we once knew, something else comes up that knocks her back down. I would be so grateful if something could go easy, smoothly for once. I hope she will feel good enough to do some things this weekend.
Aly has been using Skype to have contact with her homeroom, when she feels like it. Someone in her class asked if she liked Jacksonville or St. Michael better. She said, "I'd have to say Jacksonville." She chose Jacksonville because it is warm and there is more to do here. It has been in the 90's all week. We have thunderstorms tonight and it is going to cool down to mid 80's! :) Sorry Minnesotans! :)
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