Here is Simon at the schoolyard a few days ago. He thinks he can do anything - even with the casts on. Nothing slows him down!
It's been awhile since I've posted.... mainly because it takes almost every waking second to care for a child in bilateral casts! Even in the night hours! The prescription medicine for itching and sleep works pretty good, but not every night. I think by the time this thing comes off, we will have the routine perfected! If we keep him busy and active until around 9:30pm, then turn out the lights and say it's night time (and lay with him of course....) he falls asleep pretty quick. Our mistake before was letting him watch TV in hopes he'd fall asleep and not think about the itching - when actually just sitting there REMINDED him about the itching. So now he plays until he drops and for 2 nights we have not had any yelling and crying for hours about the itching. Six more nights to go....
Daytime hours have gotten easier and we don't feel compelled to follow him around every waking minute to make sure he doesn't fall backwards onto his head. He only has fallen once forward and scraped his nose when he was crab walking 90 miles an hour yesterday when his cousins were visiting. He even insists on "spring boarding" himself onto the couch instead of having someone help him up.
We've had a few trips now to the cast room for "repairs". Tonight the bar came detached and we panicked for a moment as his legs could move freely (and he loved it!). But I finally called the cast room and they said to glue it back in and it worked! (hot glue gun) for now at least....
Next Monday is the big day for the casts to come off! Yippee. We are very excited about that, however we will also find out more about where he is in the progression of the disease and the doctors thoughts on whether to brace him, or need for possible surgery in the future.
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