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."
Wednesday, March 16, 2011
Today, he played a little better, whined a little less, ate a little better, napped a lot better....the bifida strain seems to be going really well and my instincts to start it seemed to have filled in that hole (just disrupted with that poorly timed virus at the same time his immune system was receiving the new strains for the first time).
We still didn't get test results from the PCRCD yet. We are hoping to have them by Friday as Dr.J is going to be out of town next week for the Allergy Conference in California (they will talk about FPIES!).
Other good news is that we are going to be seeing an Immunologist here at the clinic, and thanks to another FPIES mom who has already visited there- it sounds promising!! Another doctor here that will help us with our puzzle, and is interested in learning and helping other kids here. So much progress we've made in a year, sometimes it is good to sit back and remind myself of that.