It's been a frustrating day on the FPIES front. Cutie Pie had her 9 month check-up today. She has dropped from the 90th percentile in weight to the 50th and dropped from the 50th percentile in height to the 20th. They also tested her hemoglobin (indicator for iron levels) and she tested at a 9.2 which is below normal. Our pediatrician would like her levels to be between 11 and 14. I feel like if it isn't one thing it's another. I spent the rest of the afternoon trying to brainstorm ways to get more food, better food, nutritious food into her system. The pediatrician gave us some samples of an iron supplement - but lo and behold the 2nd ingredient is High Fructose Corn Syrup. Modified food starch is also on the list. I spent the afternoon on the phone with the company, and sure enough - MFS is corn based. Now the quest begins to find a supplement that she can tolerate and then I have to spend another week that I could/should be used to trial an actual food to trial some stupid iron supplement. Then this evening she had a really runny, stringy, gross diaper (my wonderful husband changed it, but from his description and the string of "EWWWW"s that I heard coming from Cutie Pie's room I'm sure it also included mucus). Maybe from blueberries? The Hep B shot she had today? I swear we just can't ever get ahead of this stupid FPIES disaster!
I found myself today feeling sorry for myself and wondering why I couldn't just once have a "normal" kid. One that would actually agree to be born naturally. One who had no food issues. One that would sleep. But really - what human being fits into a generalized mold of normal? Certainly not me. Not my husband. Really, not anyone that I know. So then I started to think about what "normal" meant to us. Here is what I came up with:
- reading food labels on EVERYTHING and actually calling the companies personally to ask questions about ingredients.
- analyzing every dirty diaper for traces of blood/mucus/yuck factor
- Contemplating taking photos of diapers when they are full of blood/mucus/yuck
- Planning meals/activities so we will be home shortly afterwards just in case of a reaction
- Cooking three separate meals every night for dinner.
- Dreaming about Mexican rice smothered in cheese and waking up *almost* satisfied of my cravings
- anything but "normal"