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."

Saturday, July 3, 2010

Ahhh, the sweet smell of Hemp.....

On Little Man's breath from his new diet of hemp milk!

Little man has been on Hemp for 2 full days now, and he is doing very well with it. His body does not appear to be rejecting it...although I am still undecided if I should be excited! Cautiously optimistic (I am afterall an optimistic kind of person).

We have had to mix it with Neocate a little- it is just too "empty" for him to thrive on, and he wasn't drinking a ton of it the first day. So we mix it 4oz. Hemp and 2oz. Neocate and he sucks down all 6oz. (he previously would only drink 4oz. of Neocate at a time-we've been trying for MONTHS to get him to take more!). He took 41oz. of Hemp/Neocate yesterday!!!!!!! He previously would only take ~28oz(at most) of Neocate a day (many days since reaction only 20oz).

Good signs: he is a HAPPY boy- so that is good (and we are THANKFUL). His runny stools are less, his diaper rash is gone, he doesn't seem to be in ANY pain, his skin is good (no eczema), he's taking more than some thought his stomach could even handle.
Things that make me worry: last night he was up every hour and a half- probably mostly due to hunger as he didn't seem like he was in pain (I even gave him some ibuprofen and it didn't change anything), also possibly refluxing a little. BUT, maybe it is a good thing?? Maybe his GI tract is finally starting to heal and he is actually hungry and wanting the food -- he reaches for the bottle, drinks it anywhere and everywhere now (he had been refusing a lot since reaction, having to "trick" him into taking just the bare minimum of calories for him to thrive on).

I suppose this is how each new "food" is going to go- we just sit and wait and hope these little signs are not a build up to reaction....

Daddy made him Hemp Popsicles yesterday and he got to enjoy one while his brothers ate their lunch!! He LOVED it!! And whew- no oral aversions with him, yet....hopefully now we can get his gut healed and get his body to accept some "safe" foods without pain or vomiting and he can continue to move forward!

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