Fast forward to two nights ago. I went in the kitchen to make "chicken muggets" for Acorn's dinner. I re-read the ingredients for the 10th time, feeling super happy that I actually found a safe chicken nugget at Aldi earlier in the day. We'd had a tragic month of Target being out of the one safe brand we'd counted on (Ian's), and looking at countless chicken nugget ingredients at every other store possible, with no luck (and store workers looking at me like I was crazy and over protective). I put them on her favorite Blaze and the Monster Machines plate, hit 60 seconds on the microwave, and before it got to zero, she came running in the kitchen holding that delicious and dreaded box of Raisinets. "Mommy! Yucky in my mouth!" My stomach dropped and I yelled. "No! Did you eat one?!" while I jammed my finger in her mouth to try to fish it out. That poor girl had every bit of her broken heart showing on her face. She lowered her head and covered her eyes. I quickly quieted my voice asked if she ate one. "No." Of course she said no, because I just made this fragile little human feel like she did a terrible thing. She found food and put it in her mouth, like a toddler does who knows nothing about the danger of soy and milk and that it sends her in to shock within a few hours. It's strange that after dealing with a food aversion and months of feeding therapy, we've gone from "Pleeeeassse just eat one bite!" to "No! You can't eat THAT food! Not even one bite!"
I called my husband to come home from running errands, and I cried and cried and cried. I told myself horrible things and laid the guilt on thick all over my mommy conscience. I held my daughter and told her I'm so sorry that I left those out, and I'm sorry I yelled. This sweet little girl, who I had just made feel horrible, saw my tears and remembered the messages I often give to her. "Calm down mommy, take a deep breath. Take a deep breath. You happy mommy?" Maybe she's a budding therapist, just like her mama.
Remember one of my earliest posts, called Now We Wait? Well, more waiting. There's a lot of waiting in the FPIES game. When we trial a new food, it takes about two weeks for it to build in her system enough to have a reaction. However, with a food she's already had a reaction to (milk and soy), it should take about 2-4 hours to get in the digestive system enough to cause a reaction. Though we recently talked to some FPIES parents online who said their kids have reacted after 6 to 22 hours, and that sleeping slows down reaction time, and reaction times get longer the older the kids get. Ugh.(If you're an FPIES parent, and you're not on Facebook support groups, get there now! Stop reading and go! For real.) So we had a long wait ahead of us. We'd already planned to go out that evening and take her two year old pictures, so we decided to go ahead and do that to take our minds off of the wait. She wore her butterfly wings, played with sticks, and waved at deer in the woods. I watched her through my lens and thought this is what a two year old should be doing; running around and being carefree, not worrying about if mommy is sad because she ate the wrong food. Not going to the hospital, not going in to shock, not getting IVs, not being scared in an ambulance. Not today, please not today, just let her be two. And thankfully, my wishes came true. She enjoyed it, wore herself out, and slept soundly. I watched her until I couldn't hold my eyes open, jumped when she had a tiny cough, and then laid her between us in bed so I wouldn't miss anything.
That tiny chocolate covered raisin that didn't lead to a hospital stay gives me hope! It could be that she didn't swallow any, or it wasn't enough to have a reaction, or she's grown out of it. We actually have an in-office trial for milk set up tomorrow, and now I'm feeling a little more hopeful that it will go well. Some statistics say that 60% of kids with FPIES grow out of the milk portion by two years old, so we're going to see if she's one of the lucky ones. Only 20% grow out of the soy reaction by two, so we'll probably be waiting a while on that. See, more waiting.
I'll have a new post in a couple days to update on how the trial goes. It will either be an extremely happy or extremely horrible day. Maybe we should bring the butterfly wings for good luck.