Mothers Intuition

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."

Thursday, July 8, 2010

Many faces of Little Man

The many faces of Little Man....having more good days than bad lately. He learned how to High Five this week- he even says it!! He loves to make all sorts of animal sounds. Loves to play peek-a-boo and clap his hands. He gives the best hugs and kisses. He is such a loveable little guy!
Despite having blood in his diaper yesterday he had a good day, he has not had any today but has had very loose stools all day...and he clearly isn't feeling good and now the detective game begins again....what is causing all this? The Neocate? The new changes with formula? A viral illness?
I called our Allergist right away this morning, he confirmed my thought process that the trace proteins in the Neocate are continuing to assualt his intestines and now has moved to causing colitis. He urged that we stop Neocate immediatly. We notified our Dietitian of our new curve ball and she worked all afternoon on finalizing his specific new formula- Hemp base, carbohydrate sources, complete amino acid source, vitamins and minerals and a little extra kitchen looks more like a science lab! But I am SOO excited at the possibility of continuing to see his true personality shine ALL day instead of just a few hours here and there, or not at all because it is buried underneath all the pain. Today has not gone as well for him, I suppose he just feels lousy (Allergist said he might -- encouraged me to give him lots of pedialyte today...well, unfortunatly Pedialyte is all corn derived as well). He seems to be running a low grade fever this afternoon, so trying to keep an eye on that. He just couldn't settle down for a nap although clearly tired. I gave him some of his compounded ibuprofen and that helped A LOT -- which is great but also confirms to me that he is in pain. The ibuprofen wore off before it was time to give him more, I tried everything and he was not happy - so finally gave him more ibuprofen and he finally gave in to sleep.
I do not like not knowing what is wrong, or worse- how to stop it or help simply breaks my heart. Hopefully he will get good rest tonight and feel better in the morning.

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