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, August 21, 2010
We are making progress, even though we will continue to strive for more - we are happy to celebrate the little steps.
Little man has struggled with his weight since he was 6mo. old (and before), he has many periods of no weight gain (after reactions, the body doesn't absorb nutrients as efficiently thought to be because of the inflammation). We monitor his weights for when he starts to gain again, gives us indications his inflammation is decreasing enough for him to absorb the calories he takes in.
Little man lost weight right before being admitted to the hospital, one month ago. He has re-gained that lost weight and more! Since the admission to the hospital, he has put on 1#11oz.!! He went from 19#8oz to 21#3oz. (at this weeks weight check)!
He is FINALLY gaining weight- in good strides! He is also NOT IN PAIN!!! His bloody stools do continue, we are not sure when that will stop but these other signs are good indicators that we are moving in the right direction.
These indicators will also be the criteria for measuring how he is doing on the Neocate Advance (from the UK).
Keep up the prayers! We're doing something right- he is a happy boy! And for now, I can't ask for anything more.
Little Man's daddy has been building him and mudpies a swing set/fort this week. We celebrated small victories with buying a slide for it.