The feeding therapy situation was paid for, and then not, and then denied by appeal, and then accepted with the second set of appeals. Got that?

Should we post about the trials of insurance covering/not covering treatment? Let\’s not. I could lose my cool and that is not pretty. Thanks again for all of the information.

Good luck with the feeding therapy! I’m glad you got the insurance approval. Since this is such a new disease, I find I have to fight insurance for everything.

I love Heather O’s description of adversity. We live with adversity from day to day so we can put it on the back-burner and almost forget until there’s a hiccup. When those hiccups happen, I wonder what progress I have made because I feel like I’m right back where I started.

Johnny’s story is haunting. I’ve thought about him every week since you told me his story. I do think medical care has come a long way since then, but it’s still hard when we go to the doctor’s and they can’t give me any sort of prognosis or statistics because this disease is so new.

Is Grey on an amino acid formula? I credit Asher’s formula with getting him out of the failure to thrive diagnosis.

Grey’s lucky to have such a diligent mom. My prayers are with you and your family as your work to figure things out.

And no, I don’t think your knowing Johnny was coincidence. Neal A Maxwell speaks of the “intertwinings” of our lives as God’s design, not coincidence.

And as for celiac,
My husband’s brother was a dying four-year-old when he got his diagnosis of celiac. The family was living in a foreign country and returned to the US to help him live. The diet did wonders. He is now a 36, a macho man and an FBI agent, still on the diet. He has four kids, all just fine.

Their sister (age 30) also has celiac and is doing okay, although she is extremely thin and so far unable to have children.

I extend my hope and prayers that your little boy will “eat” rather than “fly”. Keep us posted.

Well, since you said tips were OK, I have a few more. If your whole family is not going gluten free, buy star stickers (or circle stickers, or whatever you like). As you unload your groceries, stick a sticker on the ones that are gluten free. (like some cereals are, some are not. Dora stars cereal is. Your son might like that) That way, as you are going to cook dinner, or give him a snack, you don’t have to remember which chips are gluten free, which ones aren’t(Pringles are not, the Lays chips that look like Pringles are gluten free). You just have to look for the sticker.

If you haven’t been there – http://www.glutenfreemall.com
http://www.glutenfreegirl.blogspot.com

Also, to be clear, not all Amy’s meals are gluten free, but many of them are, and they are very clearly labeled.

And, I’m sure that this only gets more difficult as they get older. More choices, more ways for us to feel guilty about our involvement in those choices. And although I don’t feel like that’s a healthy mind-set to have, I wonder if it’s one all of us need “get over.” Food is a beginning step to letting go of them, getting over our need to control, and instead, just let them be. Obviously, Grey’s case is a bit different, but the principle applies to so many things.

The Wiz–I’m so often tempted to just write “Wiz” but then it sounds like I’m referring to a bodily function. I’m sure you’re so glad to have that out in cyber-space. Ugg..sorry. ANYWAY, thank you so much for the encouragement and ideas. I had heard about the McDonald’s fries but not about the frozen dinners and the other gluten free restaurants/products. I don’t feel like I need to reinvent the wheel, but it does seem that I need to know an overwhelming amount of information. So, any suggestions/insider tricks are welcome!

Angie–I do feel that the “feeding” role applies not only to our children but also our hubbies. And yet, we have even less of an illusion of control with them…

I wondered for years why I got so ANGRY at my kids for having picky tastes and appetites (a completely benign ballgame, compared to yours, but here’s my point–) I realized that offering food was so fundamental to my self-concept as a mother that I felt personally rejected when they rejected my food-offerings.

I can only imagine the desperation when you can’t cajole a child into accepting nourishment that he needs to stay alive. My heart goes out to you.

I’ve often wished for a spiritual tube up my kids’ noses–I could squirt anything I wanted up there.

I could use it for spinach too.

So I have learned a lot about Celiac, and what you can and can’t eat, and we have cooked often for her. A diagnosis of celiac can feel like the end of the world, but truly it’s not, once the adjustment is made. And it is lifesaving that they can diagnose it, since people used to eat all the time, and literally waste away, and nobody knew why. It makes ward parties a pain, though.

I don’t know where you live, but several chain restaurants now offer gluten free alternatives. P.F.Changs, Chili’s, and McDonald’s are among them.

Mcdonald’s fries are gluten free, and most kids like them! Not the healthiest of choices, I know, but calories are calories. Also M&M Mcflurries, and Wendy’s frosties. The rotisserie chickens at Costco are gluten free, and after you eat the chicken, the bones work well to make stock for soup.

Also, I’m sure you’ve taken advantage of the websites out there for Celiac, and if you email companies, they will tell you if their products are gluten free (MCCormick spices are, Kraft products are good at knowing and telling you) Some companies won’t guarantee it, just for liability issues, some will.

Amy’s frozen dinners are great, and label clearly, but I don’t know if they appeal to a 2 and 1/2 year old.

Good luck to you. The diet takes effect pretty quickly, so I hopw you see some serious growing soon.