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."
Sunday, October 17, 2010
How is Little Man?
Today, he woke up stuffy and with a low grade fever, remained "clingy" all day and then threw up this afternoon. We have no idea what caused it. It wasn't violent so whatever it was it was only "mild". He felt better after his nap. What is causing all this? How do we proceed when we are barely moving and we are getting all these mysterious signs/symptoms. Can we attribute it all to his anemia? What if he is slowly building towards a reaction? What if he is having blood in stools again? His last positive stool samples, we couldn't even visually see the blood- it was microscopic.
We see GI on Tuesday, an Allergist (this will make #4 for Allergists, #1-no FPIES, #2, absolutely no doubt FPIES, #3- confirms FPIES, #4 - ?). We need this 4th Allergist because he is the one actually in the clinic where the rest of his team is. We only ask that he be open minded, and willing to learn so he can help Little Man.
We will proceed with food trials tomorrow, I think....