Wednesday, November 28, 2012

In the spirit of Thanksgiving

Despite stress and different things weighing on me at different times, I have so much to be thankful for right now. For starters, we could have lost our little boy again this summer, and not only is he still with us, but he's truly thriving for the first time. It requires a lot of daily work for that to happen, but at least we are seeing overall payoff. That's enough to give me hope.
This summer was another rough one, and I'd like to give a special shout out to everyone who supported us, and of course the same for those who have been with us for the past 4.5 years. I experienced help from some truly spectacular people. People who dug through my disastrous desk to find medical records and overnighted them to the hospital in Dallas because that is shockingly faster than they could figure out if they could email. The rifling through toy boxes to find the one special airplane and, again, overnighting it so we could see our little boy's eyes light up. Countless supportive texts messages and phone calls and funny additions to the line of family group texts. Visits from old friends and friends I'd never even met at the hospital, and those gifts that James still treasures when so many other toys and books have fallen off the radar. The care packages and socks I still wear and love. Egg collecting from demon chickens, watering cattle, riding horses, offers to actually take all our horses into training with no doubt you would actually do it!
The manic gluten free-edness (it's a word), the wine, the bubbles, the babysitting, and the endless understanding and driving at least 45 minutes to visit us because sometimes just getting in the car is too much.
You all know who you are and I will never be able to repay what you mean to me.

- Posted using BlogPress from my iPhone

Tuesday, November 27, 2012

All the blog posts in my head...

Oh there's lots. But it seems like every time I have a post in my head, it takes a few days to get around to writing it, then things change, then I have a new post in my head and they get all muddled together, I confuse reality with blog posts, then I have a nervous breakdown...and then the cycle starts all over again. I feel like I might be really hard to live with....
Anyway, here's a recap of the last...while:
Last post I was a bit ho hum about everything. Shortly after that James actually started to gain weight! It kept going long enough that I even told some people it happened. Mostly we get nervous when things are good because, historically, that's when the shit hits the fan. And so I wasn't surprised when he started having diarrhea again. We wracked our brains trying to figure out if he had gotten into some gluten somewhere (our house is now 100% gluten free...we even have some wonderful friends that slice bread and put it in ziplock baggies at home if they bring dinner). But we tried to go out to dinner, where he ate none of the food but did vomit after dinner, at the restaurant, on the floor, while we were meeting a new family....they never did send me an weird....anywhooooo...
Well, I finally figured out that I had switched to a gluten free all purpose flour blend that has milk powder in it. And as the kid eats pancakes twice a day, by the time I made the connection, he'd eaten an entire bag of it. As soon as we stopped he got marginally better. But I feel like, for whatever reason, major damage was done. And we are still working back. We tried out some new pancreatic enzymes, but for whatever reason, they seem to officially make things worse. I feel like if someone could put together all the 'for whatever reason', we'd get somewhere. But apparently they can't.
So now we are coming back from the 'milk powder incident' AND the 'pancreatic enzyme incident.' sigh. But I'm thinking things are looking up. He's regained a little weight, which is mostly fluids. Because "for whatever reason", he just doesn't absorb or retain fluids normally.
All this stress makes me a super crappy mom, unfortunately. I start to stress more about his eating, he feels it, and I feel like we butt heads several times a day and I go cry in the bathroom. But then alternately he does something he's never even attempted before and I didn't even know he could do, like climb up a fence to pet a horse.

Or have fun hiking and climbing

Or climb a tree with his friends

Or decorate a Christmas tree

Or help out with the cattle

Or I watch his sister do things I had no idea a kid her age could do

Anyway, as I write this I'm reminded that things certainly aren't all bad and we are getting by with sense of humor intact. And probably I should keep posting because evidently its pretty therapeutic!