The rumors of my demise have been greatly exaggerated.
We’re still plugging along, doing our thing. Here’s some interludes.
Tonight at dinner, J was standing on his chair (which he’s not supposed to do of course) and he was conducting an unseen symphony before he picked up a chip off his plate. The chip had gotten ketchup on it. He gasped dramatically and started saying sorry repeatedly to it while trying to repair the damage. When repairs were impossible, he ate around the afflicted part and abandoned the rest of the chip.
This is my life.
Yesterday, at an early morning OT session, he crawled into his tunnel and did half his session from within it. He’d crawl in and out, pausing only to attend to tasks from his OT and then back to the crawling. It seems so silly but it was an effective motivator. Just have to remember to keep the tunnel available.
Today we visited the ENT. His gagging has been awful since, well, solid foods began. It was always assumed to be behavioral. He’s extremely defensive and sensitive about his mouth. However, it’s been discovered that the gagging cannot be recreated behaviorally and not for lack of trying. He also has episodes of lapsed breathing (!!!) and snoring while sleeping so off we went to try and solve this mystery.
We saw Dr. Andrew Doolittle in Winchester, MA, and though I was uncertain at first I appreciated his approach to J’s situation. J is a seizure risk. His usual response to what he saw in J would be to schedule a tonsillectomy and see how things go from there. However, this might not be the root of all things with J. So we’re going to do a sleep study then consider our options from there based on what that tells us. I like the cautious approach even though the study will be difficult. I would rather have answers and the ability to consider other options before braving surgery and, more frighteningly, sedation.
I’ll update when we get a date for this fiasco to go down. I think I’ll need to get those conducting the study to sign wavers, for serious. J’s no picnic with these things on a good day, never mind tired and angry.
So that’s the way our cookie crumbles these days. I’ve got a hilarious little boy telling me tall tales in minion, reciting scenes from movies (thank you, Megamind) in his own manner and just generally being trying but hilarious. So much of his behavior can be seen as him being 2.5 years old. Other things, well, that’s all you a-word. All you. There’s never a dull moment.
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