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Sunday, December 27, 2015

"I Outgrew FPIES!"

The video says it all.


As many of you are aware, it's taken me a long time to write this post.  The video above is from November 23, 2015 when Myra passed her final food challenge (a retrial of a food that had previously caused a reaction-in this case, avocado).  It's just that I don't even know what to say.  For almost 3 years, our lives revolved around FPIES and special diets, first mine (for Myra's breast milk as proteins do pass through to breast milk) then Myra's.  You guys, kids eat a lot...like five times a day, if not constantly.  And for us, basically all of that food had to be separately prepared.  No restaurants, no potlucks, no friends hosting meals...I mean, those things happened, but always with our own food prepared ahead of time for Myra.  Her health and all of our sleep and sanity depended on it, don't get me wrong it was well worth it, but now that's all just done.  No more FPIES!  I got her a kids variety basket at Joe's Crab Shack a few weeks ago and didn't even read what all came with it.

Of course, we've gotten off to a great start of feeding Myra, and now Niko (who shows no signs of FPIES at all) nutrient rich foods like quinoa, spinach, and squash.  Myra is used to hearing no, and doesn't really argue if I tell her she can't have something.  It hasn't been all bad-I know a lot about nutrition now!  She's still a toddler who wants what she wants even if it's the same thing she's had for the last two weeks (and two years!).

I have to thank everyone who has been mindful of Myra's FPIES and special diet over the years.  It really means a lot when people remember, ask, leave labels out, and especially prepare things so that she could be included, too.  It's not easy, trust me I know, but it hasn't gone unnoticed.

I also have to thank the wonderful people I've met along the way.  Thanks to medical professionals and the world wide web, I've crossed paths with some great people who have understood our struggle and shared their wealth of knowledge and that has been such a blessing.

People have been asking me if it's weird just feeding her whatever now.  Somewhat, yes.  But we've been so hopeful and optimistic this day would come, it's like we shut the door on FPIES as hard as we could when it was time.  But yes, it's weird and great and exciting and relieving and...you name it.  We ditched her MedicAlert FPIES bracelet and got her a new bracelet with our phone numbers on it since she really did like her jewelry.  And that, my friends, is a wrap.  For the FPIES/allergy families who are following along or will read this sometime in the future, please don't hesitate to contact me!  I am happy to share our experience, offer insight, or listen to venting at any time. I mean it!

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