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."
Thursday, February 10, 2011
We're going as fast as we can...nowhere.....
Are we less lost now? Yes, and no. We've learned so much over the past year. If I had known then what I know now, we could have really saved Little Man some pain....but that wasn't God's plan. We have to keep remembering we are mere servants to God's plan. My Faith is the only thing bringing me through some days. Days I've had recently where I am emotionally and physically drained. Going at this moment by moment. We're going as fast as we can....no where.
Every food we try, he reacts to- usually by day 3. Sometimes there are early signs that it may not be going well but not enough to stop the trial....slow it down, keep it steady- yes but not stop. And then it's as if the floor falls out from underneath and the symptoms build.
What is going on? Yeast? Bacteria? Leaky gut? Over-reactive Immune response? Held off food for too long and now he's over-sensitized? All of the above? What are we missing?
I feel as if I am standing over a 5,000 piece puzzle....I have so many of the pieces in place but I'm still standing here with a few- and I can't find where they go. The puzle looks complete, but did I put one in the wrong place? Do I need to look at it up-side-down? Turning, turning, turning those pieces to see where they match up. It just feels like I'm so close....so many, many hours of research and sleepless nights trying to wrap my brain around what is in the research and how it matches to not only my Little Man but to so many others who share similar experiences.
I am optimistic that Dr.Jyonouchi at The Pediatric Center for Rare and Complex Diseases, and author of Non IgE Mediated Food Allergy can help me with these last puzzle pieces. I don't expect her to solve the puzzle- just help me to see how I can put the pieces in to fit so we can move forward once again.