FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Tuesday, August 31, 2010
Improvements
Praying for things to continue to go in this direction....
Quick update tonight. Little Man is doing better today. His explosive diaper this morning was a tell tale sign of his "slight" reaction yesterday. It typically will end once that diaper shows up (as long as we havent' pressed too far). His intakes were down a little today but he managed 50oz. of a "new" formula mix that I have added a hemp protein powder too. This powder will bump up his protein and iron really nicely in his formula so I am glad I finally found a powder that would mix nicely into his formula. He did very well with it today.
Another good news we had today is his weight check revealed he regained his lost ounce from last week, and gained an additional ounce on top of it. So, 2oz. in 1week- yea!! This, with his baseline - we really are optimistic that we can get a better handle on things and move forward.
We ended the day with a "normal" activity- and little man participate in! I put the boys to bed with stories and bedtime prayers, and goodnight kisses- he is often too fussy by then to partake- not tonight and he insisted on being included!!
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