So, I'll tell you that she can have milk. It's safe! We 'officially' trialed milk for 12 very long, very painful (for me), breath-holding (for me), not-sleeping-well-at-night (for me), paranoid (me again), worry-filled (um hmm, me too) days. John...not so much with the worry and the long days. Ginny...not a whimper or even the slightest sign of mucous-y poop (it's been so long since I mentioned poop in a post!). Milk is safe. She drinks it every day, multiple times a day. She prefers her milk in a glass or through a straw and seems to get very confused and frustrated with sippy cups, but whatever works for her works for me. Bring on the straw and the glass and give the girl her milk! For now, we're sticking to one brand of organic, whole milk to be safe. And we've been kinda particular about the cheese she gets too (although, to be honest, she isn't so interested in ANY cheese. Could this really be my child if she doesn't like cheese?!) and haven't yet branched out into yogurt or sour cream or cream cheese or, dare I say it? ICE CREAM! But we will. Slowly, but surely, we will.
This has all kind of rocked our world. Ginny, for the most part, continues to sleep through the night. She drinks milk. She has become, in direct proportion to her milk intake, less dependent on nursing. (I knew that would happen and once wanted it to happen but forgot how emotionally difficult this would be for ME. Sigh.... every single thing about raising a child is bittersweet, right?) John is suddenly, incredibly optimistic; vacillating between the belief that Ginny has grown out of FPIES completely and that she never had it at all. But he still doesn't want to trial rice or wheat or soy or legumes or poultry. I'm still worried. I'd like to consider potatoes next - and maybe corn down the road so we could give G some quinoa pasta (which is 1/2 corn and 1/2 quinoa). I still worry, but I'm happy too. Milk opens fewer doors than I imagined, as far as prepared foods go. Soy is in freaking EVERYTHING. But we have lots more options for sure - and when I read the blogs of FPIES friends who are struggling still, who have NG tubes and G tubes, I know we are blessed and lucky.
It's Valentine's Day. Like I said, not something we usually make a big deal out of around here, but today is a big deal. Officially declaring milk safe is a big deal. One more step toward a 'normal' diet for G is a big deal. We're celebrating tonight and send our love out to all of you - those of you celebrating Valentine's Day, those of you who don't, those of you who are still struggling in the FPIES trenches and those of you who are having success too. We send you our love and thank you for all the love you've sent us too.
A fun themed snack for Ellie's preschool Valentine's Day party
Our Valentine for Ellie's school and Ginny & Ellie's friends
MILK?! That is SOOOO awesome! I'm so happy for ou guys, and slightly jealous, too!
ReplyDeleteCan she have ANY soy? Like the soy oil or lecithin? We are ssslllooowwwllly trialing soy oil and it seems to be going ok.