Thursday, June 7, 2012

The Long Road

We are on the verge of starting our first "post-baby" food trial for B--- Elecare Jr. unflavored. We start on Tuesday and this is the last stop for elementals for B. If this is a bust, then we move ahead to the amino packets and creating a formula. In thinking about all that comes along with food trials, I found this old post that I never published from B's third bday. Just a quick note though before you read on--- for all of you starting this journey, please know that most little ones DO outgrow their triggers/reactions and there are lots of reasons to hope. This is just my personal reflection on B's specific situation:

Well, we have seen the third birthday. And the day came and went. It was a great day--- hands on museum, Wendy's plain baked potato (and they put it in a kid's meal bag WITH a kid's meal prize. B's first ever and she was so impressed!), frog shaped cake and only one dose of benadryl (pretty sure the culprit was the hands on museum). But B has FPIES and the third birthday, as the other FPIES parents know, is the biggie, the one you wait for. The time when you are supposed to hit a fork in the road, when the fog is supposed to clear.

The change did not come, not for my B. As of a few days ago, the reaction to another elemental was confirmed. I know we could be much worse off and I am truly so grateful that we aren't. This doesn't stop me from being discouraged and to be honest, from being a little scared. I have always felt like I had a plan in the back of my mind. A way that might help things, a new idea that might work. To be honest, I am out of ideas. I don't know why she keeps reacting to anything new. I don't know why trace amounts of certain foods can just send her spiraling out of control. I love reading all of the success stories and am so happy for the friends we have met along the way being able to move on. I just hate feeling like my B is being left behind. We are still here, still in the thick of things, well over two and a half years post diagnosis. I know it sounds selfish, but when is it going to be B's turn? When does she get to move on? Hasn't she seen/felt enough?

N and I were commenting tonight on how clear a fail is once the food/drink has been pulled and how muddy it seems before hand (in the absence of a full blown FPIES reaction-- we were talking about chronic reactions). It isn't until you take the trigger away until you can see how clearly it has disrupted so much. Since pulling the formula, B has been EATING. (And she was only getting 4oz of formula a day). I have never seen her eat this much in her entire life (outside of nursing). She is asking for food, for good food (not just the typical 3year old asking for smarties). She is engaged, she is happy. Yes, she is still the lovely spirited and strong-willed child that I know and love, so we are seeing "normal" tantrums, challenges, etc. but over the last few days they have been NORMAL. She is sleeping without screaming those awful screams in her sleep. She is not doubled over in pain. I am not changing sheets and her mattress pad daily from diarrhea blowouts that go up her back and down her legs. And she isn't throwing up in her mouth throughout the day.

I must say that I will be a sad mama once the formula hiatus ends.

2 comments:

  1. Wow! Thank you for sharing. I think it is so important for us to have these moments and mourn the loss of normalcy that we always dreamed and imagined for our little ones. It's a catharsis and healing that helps us pick ourselves up when we're done and get moving again! Such an intimate and special post that is inspiring!!

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