Friday, August 23, 2013

The Great Gluten Debate

Someone needs to fix this. I like to blame celebrities for thinking we all need to know what they think about things. Most people should just care what I think about things, so here goes: ;)

I get asked, excitedly, all the time if I feel amazingly better since our household went gluten free. I feel the same. I didn't have gut issues before; I don't have them now. If you do have gut issues, go to your doctor and determine of gluten is a problem. If you don't carry whatever gene or whatever causes a reaction to gluten, whether that be celiac or an intolerance, then going gluten free won't do anything. There are lots of crappy substitute gluten free foods for all the crappy gluten full foods out there.
The other question I'm asked is if I've lost a bunch of weight going gluten free. Again, no. I've lost weight because I run several miles a day, and eat fresh vegetables and grass fed meats every day. And I drink wine, because it helps everything. Gluten is not the be all end all of everything.
I say this because of another question I get asked all the time with great skepticism: sooooo, do you think the gluten free diet is helping James?
To these people, I actually want to throat punch you a bit. I mean, let's see....we've been struggling pretty much since James' birth for him to gain weight and be healthy, he's had multiple lengthy hospital stays, a fucking feeding tube (!!!), PICC lines when he could no longer absorb nutrients the old fashioned way, baffled the international medical community, and NOW, after being GF for a year (along with many other additions, done methodically of course), he's....pretty damn good. He's not 100%, but the average person wouldn't know that looking at him. And anyone who had seen him in the past would be shocked at the transformation. So, yep, I think it's helped a bit.

But because of this skepticism, I don't trust any restaurant or most other people around my son's food. I have to pack food wherever we go, which isn't inherently bad, but it'd be nice sometimes if going out to eat what a treat instead of a hassle. I have to watch other parents who are handing out food to make sure they realize I wasn't kidding. I get the eye roll when I explain James is GF and I basically tell people he'll die if he touches gluten. That's clearly a bit of an exaggeration, but I blame this stupid fad that belittles the seriousness of a necessary gluten free diet! Stop it!
Rant over. In conclusion, no, I don't feel any different eating gluten free. And yes, it makes a big difference for James. Thx.

Tuesday, August 13, 2013

Birthday Redo

I've been meaning to post this since my birthday, and it's halfway through August soooo.....
Things have been busy! But good. A far cry from last year, that's for sure. Last year I spent my birthday in the hospital in Dallas talking to a bunch of doctors who didn't know...much..., while my parents drove my precious little one year old over for visits.
This time last year we were still in Dallas, living at my parents, with James hooked up to a PICC line and Eve sleeping in the closet. Have I mentioned how awesome my parents are?
Anyway, that whole experience was sort of a waste in the sense that we were hoping that even with all the awfulness, surely someone was going to figure out what was wrong, finally. But that didn't happen so really it just sucked. I think 6 months later we were back where we started.
That, though, sent us on the path to New York, and THAT is what led us to this amazing summer we are having!
James looks so great and is still slowly gaining weight. Mostly, he feels good and acts bad!! ;).

Eve is the same.

It's helped that we are having the best weather in the history of VA summers, so we've spent a lot of time at the barn with BOTH kids riding. James never wanted to ride much before because he felt miserable all the time and then would get too hot or cold. Not only is the weather perfect, but he seems to be able to regulate his temperature better. I'm assuming just from his neurological health improving. He can go swimming without turning blue in 5 seconds. Things are kind of....still moving towards normal....
Well, we're easy to please. Things are far from normal, but we are basically functional now! So that's a plus. Just hoping we can keep this trajectory and maybe next summer we can do something crazy go on a vacation....

Barn rats.

(We are holding her leg)