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, June 4, 2011
We have spent so many countless hours researching into his allergy, researching into helpful doctors, doctor appointment after doctor appointment. Some helpful, some not so much but always worth that risk that it could be someone that may be able to help. Along with that comes costs that are priceless but not countless.
When our little man is screaming day and night, pain is with him all hours of the day, we are told an expensive prescription-only formula will help him. It's costs are high but we do not hesitate, if this is what he needs- we will do it. After a few months of emptying out our savings account, our insurance appeal is accepted and the formula is paid for. God provides, we have hope.
We then have a little man who is throwing up every few days and we hear of a hospital (CHOP) that has physicians familiar in diagnosing this rare allergy....what would you do? We got the first appointments available, and make a trip half way across the country. We were blessed to find an allergist that not only knew immediately that Little man has FPIES but also that his worsening of symptoms and inability to heal is due to a corn allergy. God provides, we have hope.
We find out the prescription based formula that so many kids are able to thrive on, is what is causing his pain and throwing up and inflammation to progress, now we must move him to a homemade formula with specialized ingredients available only through special order or natural food stores. We can't not buy it, and there are no sales on these items, no coupons to clip. His new formula will not have insurance reimbursement. Just when we feel there is no way we will stay afloat for another 2 weeks, something comes up that helps us through. God provides, we have hope.
Little man continues to be ill and requires a month long hospital stay, providing for a family through a hospital stay stretches past our already overstretched budget. We continue to have Faith. God provides, we have hope.
A specialist in Non-IgE Food allergy is found to be accepting patients through her research study. It is half way across the country again, and we feel her consult will be a big piece to our puzzle. The research I have spent countless hours doing shows me that it will be a worthwhile consult. We have achieved a better baseline with him than we could do on our own, with her help we are closer to healing him. God provides, we have hope.
A benefit is planned in our little man's honor. A benefit to raise awareness and funds for research but also to raise funds for his medical expenses and formula. God provides and once again, we have hope.