Things have been pretty rough lately. I find myself just trying hard to get through each day. I play Farmville on Facebook to keep myself from worrying so much about Andy. It actually works well. I play while Andy is asleep. I find myself just trying to get through these days, and hopefully I'll come up for air soon and he will be doing something new. Andy is extra irritable lately, possibly due to a molar tooth coming in.
He moves around backwards a little bit in the gait trainer, but I think he gets bored in it. I am trying hard to have his AFOs on his feet anytime they are touching the floor, which means sitting in a chair too. He doesn't care for me putting them on.
The eye patching hasn't been happening a lot lately because he is SO irritable already. Why add to the irritation?
Appointment managing for Andy lately has been tough too. I find myself dreading scheduling some of the visits. There are so many to keep track of. Lately I feel like all we are doing is going to appointments. It just feels like no fun.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Sunday, July 24, 2011
Monday, July 4, 2011
We have the gait trainer
Andy's gait trainer has arrived a month later than promised, but it is here. He isn't doing very well in it, so it has been depressing. I try to put him in it two to three times a day, usually ten to twenty minutes at a time. At least he will let me put him in it without fighting and fussing. He will stand straight up 5 percent of the time, and maybe bounce a little. I guess I am not expecting to see steps for a few months.
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