Last year just before we moved down here he was battling constant MRSA infections, missing at least a week of school a month due to infections, had just finished his IV Vancomycin through his PICC line, and was dealing with that horrible NJ feeding tube since the infections plagued his GJ tube in his stomach. He had also just been diagnosed with a primary immune deficiency. It was a pretty darn rough time for Beans.
We moved down here with the NJ tube in place and, being an active little boy, he was constantly getting it caught and pulled out. Replacements were pure hell. In August, Beans started school in the self-contained autism classroom as he was still refusing to speak if he didn't know you well. Hahaha just to think of that now just seems unreal. He's turned into quite the friendly little boy, even walking up to other kids and asking them to play, talking people's ears off, and most annoyingly - wanting to touch people constantly. Ahhhh!
A couple weeks after school started his GI in Orlando got his NJ replaced by another GJ and got that nasty tube out of his nose. He was back to his normal continuous intestinal feeds running 22 hours a day. He started to love going to school again and was ready each morning when the district van came to pick Little Man and him up.By November school had him going to an inclusion class for math with his 1 to 1 aide. He was thriving and interacting with "typical" kids. Whines about his homework
but does it anyway.In December he was admitted for a week - and to everyone's amazement and pure joy - he made the switch to being fed via tube into his stomach every 3 hours instead of connected to his backpack being continuously fed for 22 hours a day. He'll still require his feeding tube for the foreseeable future due to dysphagia and his esophagus not working properly but this is a HUGE improvement in quality of life for the little guy.
January started off with him full time in the inclusion classroom! I really pushed for this as his social skills had come so far. Socially he did do fine. He made friends! He was starting to learn to play with other kids at recess with prompting from his aide. And then the downside hit. Everyday after school he'd come home and was either a total terror until bedtime or would come home and crash and cry for ages. His illness rate was ridiculous and he got to the point he'd go to school for two days to be out for five with fevers. He lost the progress he'd made on the bolus feeds in December and was back on his backpack full time. He ended up going back to the self-contained autistic classroom for the full day. His one on one aide worked with him intensely and we discovered he seems to have some degree of learning disability in reading but we'll work more on that this coming year. He will be retained in second grade as his current academic levels are only that of late kindy/very early first - except math where he shines. :D
On the 23rd of May Beans had his 8th birthday! He celebrated at school with his friends - notice NO backpack! He made it back to bolus feeds shortly after going back to the special ed class. He brought french fries and cupcakes to share and loved being the center of attention. May also came with a visit to genetics to try and find the common denominator for so many issues. After years of searching and never knowing the cause, I was shocked when a month later the phone rang and there it was...the answer. It was discovered Blade has a chromosome deletion. We're still in the process of figuring out what all that means and its full implications but at least we are getting there now.
Beans is looking forward to the last few weeks of summer by playing at the park, visiting the beach, and watching our newest friends - a massive family of tadpoles in the backyard. One year from PICC line to no line, continuous intestine feeds to bolus stomach feeds, no answers to finding a diagnosis. Wow.
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