Tuesday, July 30, 2013

Good Things Come to Those Who Wait

And fly all over the country. And drive thousands of miles. And spend months in the hospital. And make loads of mistakes. And spend shit tons of money on things that may or may not help.

Last week James had his school camp. Usually he goes for a couple hours, 3 days a week. They run awesome camps in the summer that are all week and 5 hours long. That may not sound that long to you, but to a kid who barely eats on his own and has all sorts of bathroom issues, it is basically eternity. The last time we tried this, he had to take a day off in the middle, I ended up having to go at lunchtime to feed him and take him to the bathroom, and less than a month later we were back in the hospital for over a month. Again.
So to say I felt some trepidation is...putting it mildly. I knew he was in a better place than last year, obviously, but I was afraid we'd lose what little ground we've gained recently and I just sooooo didn't want to move backwards.
What I ended up doing was have him eat his usual gfcf pancake breakfast, then we'd get to school and I'd feed him pediasure pudding which he actually doesn't like but it makes a big difference in his day. Then for his lunch I packed his fake cheese and trail mix cause I know he eats it the best on his own. The problem is that he's very easily distracted so during lunch, if no one reminded him, he would maybe take a couple of bites but mostly would be watching other kids or playing in his creative little head. Of course, SMILE was great and helped give him reminders and he did pretty darn well. When I picked him up I would sit in the parking lot and feed him his gfcf Mac n cheese, then we'd drive home and then basically it was time for dinner and bed. Everything revolved around the meals. It sort of took me back to the tube feeding days (PTSD).
Oh also, you know we carry a small toilet everywhere we go because last year he associated how sick he was with a normal toilet, which he'd had no problem with before. Partly it's great because we drive long distances with no bathrooms in between so unless we want to knock on a farmhouse door, it works. Plus Eve has potty trained herself so it's proved useful. But still, it sort of became a panic situation if you didn't have the frigging potty everywhere. He wouldn't even pee outside. And I mean...full blown panic attack.
We haven't been actually worried about the long term effects of this. I figured he probably wouldn't be heading off to college with a potty slung over his shoulder, so it's all good. But it sure would be nice if it was a non issue. And all if a sudden..it is! First he peed outside (I'm aware he's gonna hate me someday for documenting all this) and I've never been more redneck proud. Then he stood up to pee in the toilet. Then he started using the big toilet like he's been doin it forever. I still carry the little potty around cause I'd just rather be safe than sorry, but so far...non issue! Amazing. And life changing.
So camp was a success. He didn't actually gain any weight that week, but he didn't lose at all so we count that as huge. And, of course, he had an absolute blast!

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