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, October 8, 2011
Another week of progress
We've been enjoying the fall, enjoying the other boys, getting household projects done, and just getting things ready for the hospital admission (still scheduled for Oct.17). He has a scope scheduled for Tuesday, it is the first time in a long time we won't have our GI and I'm a big nervous about it; but it is the other respected GI and he needs to have it done in a long enough time before his food trial so the effects can wear off before the trail.
Coming out of "survival" mode can be an adjustment though, with Little man's FPIES being chronic- we are never sure what the day will bring, sometimes not what the next moment will bring. We have had to build some truly strong coping skills. Although sometimes, I'm still faced with new situations and not sure which way to cope. I am reminded of my Blessings and I continue to put my trust in my Faith.