FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
Mothers Intuition
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."
Monday, September 13, 2010
Ice chips are a treat when they are all you can have to eat
stay
Little man is back in the hospital. We hope it will be a short stay but his hemoglobin/hemotacrit have dropped to low. He may need a transfusion. For tonight, they are holding and monitoring and will decide more in the morning. He has had a low iron ever since we started checking it but recently dipped too low, and now has dipped below ok.
Not much time for a long update. Will update more tomorrow when I have a computer.
Oh Joy, I'm so sorry to hear this! We're thinking of you and will anxiously await an update. Big hugs to you all.
ReplyDeleteBig hugs from OZ Joy
ReplyDeleteLove Suna XXX