So, this is my first blog, and I hardly know where to start. My 13yr old daughter is having a sleepover tonight with her friend, Kylie. We made cookies after dinner, then we sat down to watch the movie "Zombieland". I don't know how normal something like that is, but we all have sick senses of humor, and heck, why not watch it for the 16th time.
I put my 16yr old, Becca to bed at about 8:45pm. I kept her home from school today, as she was just a little too quiet this morning, even after getting tons of Levo Carnitine in her hydration all day, and another bag of it at night, along with the Intralipids. I cannot believe how long it is taking her to get back to her baseline. We may have lost her baseline with all the infections she has had since October. She tires even more easily than usual and is very shaky on her feet. If she would lay down and nap, I think she'd feel a bit better, I know I usually feel better after a nap.
Keeping Becca home today threw a wrench in my plans, so I'm really feeling crabby and cooped up. The anxiety is getting the best of me, and I've taken to watching "House" reruns on TV. Can't concentrate on reading, can't even concentrate on finishing a task I start. Michael is working tonight, and will be plowing the storage units tomorrow, most of the day so I'm on my own again as Nurse, Maid, Accountant and chief cook and bottle washer. I so need a break it isn't funny.
I need to work on getting some kind of respite set up for Rebecca at Northwoods, which is a skilled nursing facility. I'm to the point where I've tied a knot at the end of the rope, but I'm chewing my own arm off to be free. I don't know if it would really help me in the long run, sending her there for a weekend, or even a week, as I'd have to explain how everything is done and show people how to do it. Her ACE is not a complicated thing, it's just not a common thing, and if the skin breaks down there are certain salves to put here and there. And what to do with Becca's own anxiety, as she pulls her hair out and tears at her skin. Aye yi yi, just thinking about all this is making me tense. I've got to end now and go to bed.
