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."
Friday, September 3, 2010
Enjoying days with a baseline and the last days of summer...
I have continued to tweak his formula and now have added Hemp high protein powder to his current formula. This bumps up his protein and calories well, it also makes it a bit thicker so I am still playing with the right ratio of ingredients to make it most palatable for him. He has had varied intakes over the past week/week and a half and it always makes me nervous when he doesn't seem interested in his bottle -- especially when we are moving in such a positive direction for him. I am so nervous about him being sick again - not only losing ground but backtracking. I just wish everything could continue to go in this direction all the time.
He has had some 'typical' toddler things this past 2weeks- he is teething his 1yr.molars, tonight I felt a sharp tip on one side so those are close to coming through. Then, we are a sharing family- and that includes the germs and Little man has quickly developed a cough. He was diagnosed with asthma during our consultation at CHOP so we have the usual medication profile for an asthmatic. Except, how do you give an inhaler to a 14mo. old? Well, when he needs it- you give a nebulizer treatment instead. Little man got one last evening because daddy didn't like the way his cough was progressing through the day. The albuterol in the treatment made it difficult for him to sleep last night....well, at least that is what we are hoping it was from. Sleeplessness has been a part of his previous reactions to foods. Is he reacting to something in the Hemp protein? Is it too much protein for him- afterall he does have Food PROTEIN INDUCED enterocolitis - what if I make him intolerant to hemp? What would we do then? Please, please, please - let this just be a cold!!
My updates are few lately- we've been busy!! Busy doing what? ENJOYING our Little Man!!! This little boy is SO full of life, SO happy to be pain free, so loving. He plays nicely on his own, plays great with his brothers- now getting in on the wrestling and games, "asking" them to play, "joking" with them. This is a beautiful thing to watch -- and one of my favorite things as a mom....just to sit back and watch them play....watching from a distance so they don't know I'm watching (and not asking me to referee every 2 seconds) but watching them interact with one another, help one another out, big boys caring for the little boys. It is what fills my tank....so, so, so many months going on "E" - now my cup runneth over and I find myself wondering if I can really believe it, really trust it. When that lingering thought tries to come in, I just dive into some hugs and kisses from Little Man. It's as if he knows- he smoothers me with kisses and comes running up to me and throws his arms around my neck- squeezing in a hug! I can't get enough of that.
His brothers are starting to trust it more too- this is the longest we have seen a baseline, a pain-free and happy/content little boy since he was 2mo. old. They now fight over who gets to be his buddy for the day, who gets to show him this new thing, or teach him that new thing. It warms my heart beyond what words can express. When I can't express the words and I worry about the memories escaping with time, I photograph moments. Here are a few....backyard swing time, popsicles (hempsicles for little man), a trip to the local zoo, and a Eagle attraction center. We've been busy- we've been "normal" family of young children.