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.
Saturday, February 26, 2011
Eye patching update
Andy's right eye still drifts a bit to the outside, both eyes used to drift equally. We started out with alternate eye patching for two hours a day. For example, patch the right eye on Monday for two hours, then the left eye on Tuesday for two hours then, Wednesday back to the right eye again. The left eye improved rapidly, and we hardly see drifting now. I took him in for a recheck, and at the time, I was constantly forgetting to patch his eye. I'd only do it maybe 4 times a week. They told me to now patch for the next 6 weeks, two days on his "good eye", then one day on the bad eye, bumping up to three hours a day.
I now keep a calendar right in the family room where we spend most of our time. It helps me to remember every single day, and I only forgot once, because we were gone from home all day long. It is also helpful to try and patch during set times, like 9am-noon. This is my favorite time to do it, because he finishes breakfast around 8:45, then put the patch on. If we have running around to do for the day, I wait until we get back home and patch from 3-6pm, or if I forget and remember late, I'll do it 7-9pm. I don't like to have his patch on when taking my daughter to school, or running up to a store, because everyone wants to know "Oh my, what happened to his eye?". Every time. So, I just like to do it at home and get it over with.
Doctor says he will probably eventually need surgery on his right eye, the bad eye, we are just waiting for him to stop favoring his left eye. When he demonstrates "equal use" of each eye, he could then get the surgery if we feel he needs it. They told me the next time they see us in a couple of weeks they will probably up the hours on the patching of the bad eye.
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