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."
Sunday, June 20, 2010
Happy Father's Day!!
Samuel has been declining again, I'm assuming it is because of his reaction to corn 3days ago. But it reminds me of right before the hosptial stay- he is self limiting his formula and is now down to less than half of what he needs in a day to grow and gain weight. He simply does not even ask to eat and refuses when we try. He doesn't seem to be too bothered by it, or hungry....until tonight- he was particularly fussy most of the evening. So, I decided to give him some motrin to see if this would help. 4hours later, he emptied the contents of his stomach. Motrin, I had been starting to question his tolerance of -- clearly helps him with the pain but have been getting that gnawing feeling that there may be something in it that is still objecting to his system...now, I'm thinking I was right -- there must be corn in it. Dr.P at CHOP did say there is somewhere that compunds medications corn-free...we need to find out more about that because little man needs something to help him through the pain he experiences. If we adults had to experience that same pain- we would be asking for a morphine drip, I have no doubts.
This FPIES is a monster rollar coaster ride. One day you feel like you're prepared and ready for the challenges and the next it knocks you right over.
Faith, faith is a good thing to have...I have a strong faith and I do know without any doubts that God has given us our little man for a reason; and he has taught us so much already, and not just about FPIES but about instincts, patience, perserverance, love from brothers, devotioin of husbands (ie daddy), love and support of family and friends all around us, and about Faith.
Well, now he's up crying again....tickets please...