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."
Saturday, November 20, 2010
We anxiously await biopsy results on Monday to (hopefully) tell us more about his inflammation and intestines.
There is a great temptation to stay here at this baseline, maybe even through the holidays. Enjoy the baseline, enjoy Little Man, enjoy our family. But Little Man needs a tiny menu, a tiny menu we haven't succeeded it building him yet- in finding what he can tolerate without pain or reactions- protein intolerance, FPIES, or enzyme deficiency. He enjoys his millet puffs, and peaches continue to go well....what else can we add? What else would be safe? The GI doctor wants a multivitamin, and now wants to consider a acid reducing medication. I am not aware of a multivitamin or an acid medication that does not have corn. I do not feel right doing things that would even potentially set him back when we can trial foods that have better chances of moving him forward....
For now, we enjoy the baseline- enjoy every minute, enjoy his kisses and hugs and cute gestures, learning new words and milestones.