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."
Wednesday, December 14, 2011
Am I doing enough?
Our FPIES world has been difficult again lately as Little Man now turns 2 1/2 and we were supposed to be "growing out of it" by now....and in many ways I feel we are being pushed back to the beginning. Little Man is thriving on TPN (IV nutrition), and I am so.very.grateful for that. He has gained 6#- we are about to hit 30# now, as the geneticist that we saw last week pointed out, it is encouraging to see that his body knows what to do with calories, calories that his gut does not have to absorb (or malabsorb in his case). It IS good, it is all very good. But he is now becoming dependant on this TPN, he has less interest in even eating- how do we do trials when he only nibbles? He is 2 1/2 and has no positive relationship with food except to give food to his brothers and watch them eat. And I am struck with the "what if". What if he isn't outgrowing this? What if we don't find him safe foods? What if we find him safe foods that he refuses to eat, or doesn't know how to? What if his body begins to reject the TPN? What if there is something more going on that we are missing? What if there is some metabolic disorder that is compounding his FPIES that we haven't tested for yet? What if this new normal is our normal now? What if?
I trust in God, it is the thread keeping my peace....I have inner peace knowing that His plan is being carried out. My worry remains with what part I am playing in that plan. What does He want me to be doing? Am I doing enough?