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, June 28, 2010
He also agrees that we should hold off on food trials of FPIES trigger foods until little man is to a baseline and healthier...he has been just getting so much sicker by the day and it is so hard to see him go down this road of not thriving again. He advises, get him on the Hemp and get him eating and tolerating this, then get some fruits and veggies in his "safe/pass" foods and then when you have him built up to a good baseline, trial a grain and a meat (these can be iffy so have to proceed with caution and it's pretty much a guess work with FPIES to which grains and which meats they can tolerate).
I'm exhausted since corn fail, but so is little man - he falls asleep at random times throughout the day...I walked into the living room today and he had just crashed asleep on the couch, he usually requires us to rock him to sleep. Ok, so maybe it is a good thing- maybe he is so much more relaxed since we are able to give him ibuprofen that isn't hurting his belly and so he is catching up on some sleep. I would be reassured by that if he actually looked like he slept when he woke up, or if he acted like it- but he looks and acts so tired.
I ordered the Hemp milk online this morning, overnight shipping- should be here tomorrow....hopefully he likes the taste! Thinking of having him on something that is truly nourishing him and healing his gut- getting to see him pain free and distress free, and maybe even start passing some foods gives me chills of excitement!