New York Bound

Or maybe it's Canada. Either way, it's up there. In January. You may even see us in an episode of Ice Truckers. In a Prius.
Just kidding. We're totally not driving the golf cart.

Um, so anyway, we've gone rogue. We've gathered all hospital records and are driving to Black River, NY tomorrow to the NNY Autism Center. They want to help and since no one else does, we're road trippin it. There are two clinics that treat our only current avenue. NIDS. Fascinating stuff. Google it. Or go to http://www.nids.net/?page_id=296

To put it very very briefly, there is evidence that what we all think of as autism, or spectrum disorders, or ADHD, or SPD, is not. It's viral, and that causes autism like symptoms, in which GI issues are very prevalent. It's a kind of autoimmune dysfunction, which we have really always wondered about. Most importantly, it's treatable. It takes a long time and a lot of effort, and we aren't really sure if or how it's going to work. But at least they want to try. They will be doing a ton of labs as well as looking at the bajillion labs their poor fax machine spit out this week and there are dietary changes, antiviral meds, environmental allergy consults, and so on an so forth. It's a long process of figuring out the different sensitivities and calming and regulating the immune system and the body as a whole. And so with literally no other alternative, we are gonna try it! And we're pretty excited about the possibilities, because a lot of it makes sense and just fits. But as always, we are cautiously optimistic for now.
I give total credit for learning about this to my friend from James' school who will be taking her son to LA to the other clinic in a few weeks. It will be very interesting to see the two very different kids work through all this and see what the outcome is. Prayers appreciated for both of them! I look forward to reporting back, IF we can get there. I've already been cautioned by the clinic to pull over if there's a whiteout. Right....



:) This has no significance. It's just funny.

Home for the Holidays

For the first time ever, I spent Christmas away from my family. James has had a series of setbacks in the way of illnesses and some food related stuff and we made the decision just a few days before Christmas to not risk ending up back in the hospital, because we now recognize the signs of that downhill slope. So we thought that if we stayed home and concentrated on really regular feedings and drinking, etc, we may be able to bounce back a little and work on gaining back the pound he had lost instead of...not.
Lots of people have said that it's so great to spend Christmas with just your little family and how it may become a new tradition. Um, yes we had fun. We made the best of things, we had a white Christmas, which was fun. But you see, our Texas Christmases are awesome. We hang out, laugh a lot, eat a lot of amazing food. There's no family drama or tension, despite the family band occasionally forgetting about small children sleeping during an impromptu concert. :) We all genuinely get along. Missing everyone made my heart hurt, and I mostly hated keeping my kids away from family they don't get to see enough and really looked forward to seeing.
But nothing can keep us down too much, and as long as I didn't think too hard about it, we had a great time.
Turns out, 2 days before Christmas, you can get a hell of a deal on a 12 foot tree:

And Target has awesome clearance sales as well!

See, traditionally, we celebrate a family Christmas about a week before the real deal since we are out of town. We did this and opened all the presents the day before we decided not to go. The above picture accurately depicts therapeutic overcompensation. Also, my wonderful mom promptly boxed all Texas presents and overnighted them to us.
And it snowed! Which of course it did in Texas too, and just about as much, so it worked either way:


Let's not pretend this isn't the best snowman you've ever seen. Also, we got TONS more snow than this later. And then the next day. And we will again tonight. I should probably make a new snowman...

We wracked up a solid 4 hours on FaceTime.

Got lots of Daddy time

And only tried to ship them in a suitcase once. Ok, twice.

And fortunately, James has started regaining some weight and seems to be feeling better overall! So we know the right decision was made, and I hope we never have to do it again!!!

The Dilemna

Since James was born, Christmas has been....hectic. The last thing on our minds has been decorating, etc because then we'd just have to clean it up and I have a hard enough time of that on a regular basis. We do a lot of living day by day around here. We also go to TX every year, so we don't want to put up a huge, live tree that will catch fire on our baseboard heaters while we're gone. Nobody wants to be that person. Don't get me wrong, we do presents, we have a small tree and our nativity scene and sing Christmas carols.
In addition to this, James has never had quite the right frame of mind for Santa. He didn't really understand conceptual things, and really, what's more conceptual than Santa? This is the first year he's sort of understood that Christmas happens on a certain day in the future. Time has been a tough concept to get too. So anyway, we just have never even thought about doing a whole Santa thing. And I don't think that's bad, because instead we talk about Jesus's birthday, which is actually what Christmas is. Also (disclaimer) I don't think your children will be damaged either way. Yada yada. BUT, at school, around other people, reading stories, everyone asks about Santa, and pretty much the kid has never even heard of him! Lol! I think strangers think I'm a mean mom without knowing the whole story.
Now with Eve I suppose we have an opportunity for a fresh start in that department, or we just decide that that ship has sailed. I think we've chosen the latter.
What I'm really trying to say here is: if your kids believe in Santa, and you'd like it to stay that way, I caution you against discussing it with my kids. They're gonna out you.

Rudolph, however...totally real.

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

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 email...how 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!

At the risk of sounding offensive

I have a small rant. And I'll apologize first because, while I've never cursed on this blog, and I rarely curse anyway, it just doesn't work without. I used to have the worst language ever. I'd like to think I've grown as a person, gained more intelligence, and my children have made me a better person. Most likely though, I just have a stronger filter now.
Anyway, here's my rant.
I fucking hate it when people tell me how small my child is!!! I mean, come on! I fucking know how small he is and have basically spent a collective year in hospitals trying to fix it. Do you think I've been making this shit up all this time?! I guess it may seem cute to you, but it's like twisting a frigging knife in my chest every time you say it.
Now, that being said, there's pretty much no one I've ever met that hasn't said this to me at some point. And I understand in the first meeting, you usually say something about a kid's size or appearance. Probably we all need to branch out a little and talk about something else, but I get it. But maybe the next time you see him next to a 2 year old and you think to exclaim how cute it is that they're almost the same size...Just. Fucking. Stop.
Thank you. Also, James is going to be a ninja someday, so you may want to watch your back. ;)
- Posted using BlogPress from my iPhone

One month gluten free

Hard to imagine its been so long! We hit the ground running when we got home and I'm just now coming up for air. Or, at least, there are some surface bubbles. James has started back at SMILE and it's wonderful. And Eve is SO enjoying walking around the house and terrorizing everything.

So, gluten free. It's not just the food. You need a separate toaster and cutting boards. You need to make sure there's no cross contamination. And gluten is in SO many processed foods. Even ketchup. It's a cheap binder and anything that says artificial coloring or flavoring has the potential to have gluten in it. And then even if you go out to eat and pick a 'gluten free' item, the chances of cross contamination in a restaurant kitchen are pretty high. Now, we don't go out to eat much and I make most things myself. But it definitely takes away pretty much any chance of convenience, even just going to someone else's house. Especially when you're just getting started. Also, premade gf items are widely available now, which is great, but they are crazy expensive and definitely not all created equal. Many things are harder or chewier, which definitely tires out James' mouth. But he's hangin in there. His stomach remains much less bloated and his appetite is better. And while that is fantastic, he has, really unfortunately, lost weight. And he's eating well into the range of recommended calories.
We are not really sure of the next steps. So far the doctor wants to wait and see what happens. Probably if anyone says that to me again, I'll punch them. But as he's in Texas and I'm in VA, I have to do it via text, which doesn't hold the same clout. Bummer.
So we have a little good and a little bad and, apparently, we will just see what happens....

But here are some cuteness photos that usually make everything ok!




Eve 'helping' drive the truck to pick up hay




We found a local air show!!!!




Nice to be back with my pups!




Watching the air show. Coolest kids there, clearly.




My daughter.




Helping with farm chores!