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, August 23, 2010
I just don't understand why it has to be so hard
No, I wouldn't say our Peds GI was ready for us. They are not ready for FPIES diagnosis here. It makes me sad- sad for my little man and sad for all the other kids who could be helped by such a fine medical institute.
The GI doctor even said it herself, little man may have too complicated a case for them here....we may have to go back to CHOP. If his labs and weights, and blood in stools don't stop on this formula I have built him- they are not sure what to do. So, no- no answers....not much direction than I am already doing -- on my own. No more support than I had yesterday or the day before, or the day before from the medical community.
The support I want isn't hand-holding support. My group of FPIES mommy's help with that, my family and friends have always been there through the very beginning stages of this. The support I don't understand why is too much to ask for is support for caring for a sick child. That if he were to get sick- from a food fail or even a crumb or heaven forbid he got the flu....that I would have assurances that I have doctors that will help us help him.
Is that really too much to ask?
Does it really need to be this hard?