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, June 25, 2010
Proactive in care....
Our son is our responsibility. It isn't the rest of the worlds responsibility to know what is best for our child. It is ours. If someone is unfamiliar with his needs, our job is to teach them. We often find people just want to help, and if they know how to help, they will.
I went in to Walgreens to discuss personally with the Pharmacist. I brought along a printed article (the one I reference on my first post here) on FPIES and explained our son's situation and how vitally important the medication be suited to fit his needs. They have been so helpful with us through this -- back before we got the insurance coverage for the formula he is on, we were buying it there- they always made sure to have plenty in stock for us to pick up whenever and always made a point to ask how he was doing. They were glad to now hear we have a diagnosis and plan for treatment to work with and were more than happy to assist us with this medication request. Yes, it is their "job" but working on it for 2days, researching FPIES and his needs specifically, and calling us to double check on ingredients and additives goes above and beyond the "job" duties. We always appreciate the people who do that for our little man.
Little man had his first dose of this medication last night and he slept WELL, and is a happy little guy this morning -- he's even teething his 1yr.molars and yet no frown to be found. Playing, exploring, giggling, happy little man.