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!

Thursday, July 11, 2013

Budgie Boy

A few months ago I made a quiet declaration that has taken on a life of its own. You see, James loves birds. Loves probably isn't a strong enough word. His focus on them is amazing. He can name the most obscure bird out there. It's just like he is with airplanes. And for those wondering, yes, he still loves airplanes. He loves anything that flies because "that's how God made him." Argue with that.
Anyway, James has been doing so well eating, but his independent eating was fairly stagnant. To be fair, he has never had to do it on his own, so it just doesn't occur to him. He's more than happy to eat, but you have to remind him pretty much every bite. It's like coming out of Shawshank around here.
I mumbled to Tom that if he starts eating by himself, I'll buy him a cockatiel. Well...TOM TOLD HIM!!! Lol. James got so excited that I have to admit, his independent eating has skyrocketed. Small snacks he will do all by himself with no reminders and if we break his larger meals into sections, he is doing darn well. And when we do help him eat, he is sooooo much faster. It's rather amazing and life is soooooo much easier. That being said, we were quickly heading toward getting a cockatiel. I started researching, and then started dropping hints that maybe a parakeet would be more fun. ;). Horrible mom. But honestly, I was shooting too high with the cockatiel. Doesn't matter cause he had cockatiel on his mind and that's not easy to change.
We went to this weird mini zoo in Reston where they have a big budgie (same as parakeet) aviary that you go into with sticks of food and they flock to you.

YouTube Video

Operation Cockatiel aborted. Operation Budgie commenced.

Friday, July 5, 2013

No June Gloom

My kids and husband were all born the end of June. In fact, we only recently realized that they weren't all Cancers, and Eve is on the line of a Gemini. Cause we are super observant and awesome. I learnt it because a woman at the airport on the way back from Texas expressed her condolences on raising a Gemini. Then I googled and realized that because she's on the line, she's basically a Gemini AND and Cancer. Emotions run high. Oh, right, plus my Leo-ness...rough waters ahead. Lol! I can't wait.

All that aside, these birthdays were probably the best ever. Looking back, I didn't realize how absolutely awful those other birthdays have been. That's due to my remarkable ability to ignore the stuff I don't want to see. There are some pros and cons to this...
We went to Texas for the first time in a year. I've never been an entire year without going to Texas. I've barely gone a few months. It was so interesting to reflect back on our last flight out there. Eve was not even walking and was still nursing, while now she has potty trained herself (I take no credit) and speaks in full and (mostly) intelligible sentences. James, last time, slept, had 2 potty accidents, barely ate, and cried in hysterics in the bathroom for 20 min. This time he played games the whole way, ate like a champ, did normal bathroom type stuff, and laughed and goofed. Within a day of our last trip, we knew we were headed back to the hospital. There are no words except awful. As in, full of awe over how bad it was. This time, he swam, played with his cousins, blew out his birthday candles, AND ate birthday cake all by himself. This was the first time I think he even realized what the occasion was and cared. And that's not just because of his age, but because he's just not miserable. It was fun. It was still stressful and it still required management and food prep (I think the TSA just knows when I'm coming now), but...it was fun!
We came home and everything was...fine! Normal (for us). It's actually weird. Normal is weird.
James continues to veeeeery slowly gain weight, but more importantly, he looks great. His dark circles are still present, but fading. His stamina is out of this world. He actually has a tan, which he never had because he couldn't be outside long enough to get one. He's sliding into the kiddie pool and laughing when a eve squirts him with the hose. He's learning more and more to eat by himself. And he's gaining more interest in new foods, which is weird. :)
We are, as always it seems, a long way from ok in the traditional sense, but we aren't traditional, so we're great. He still has diarrhea every day (that's not normal), he doesn't chew foods quite right, and he does get tired. But....while that may sound pretty bad if you were to put a "typical" child in that category, he's progressing. And, dare I say, healing? One can hope. Our plan for a while is to just keep doing exactly what we are doing, and see how it goes. Lord knows we're pretty good at that!