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."

Wednesday, February 1, 2012


Even with the decision made to stop these push trials, little man was still having vomit sessions (sunflower suspicions) and now he’s falling fast- his all too familiar spiral...a sick little boy…

So, we get the labs done on Tuesday morning and we go in for the weight check Wednesday morning- along with a blood pressure and heart rate check because the lab draw reveals his hemoglobin is now down to 7.1.   It is protocol for a hemoglobin of 7 to be evaluated for a blood transfusion….we didn’t catch it soon enough for an IV iron and now he’s falling too far, too fast…we've been here before, why are we here again?

It was a rough week.  We’re nervous that he isn’t sleeping well, he is eating very poorly, and he spends most of the day in the chair (mommy holding), he’s very pale.  He’s also running low grade fevers. …something isn’t right...this isn’t supposed to be happening again, we were supposed to be watching him closely through these trials; but our pediatrician wanted to slow down his lab checks to 2x/mo. instead of weekly.
A blood transfusion was necessary, and although I am very, very sad that we have to be here again – him being so sick, feeling so miserable and exposing him to blood products- I was anxious for him to feel better.

He is doing so much better since the transfusion!  Saturday was a rough day, we were at the infusion center from 1:30 until 6:30pm but he did really, really well.  His energy level picked up and his cheeks pinked up.  He was happy to be home and feeling good.   The following days,  he played and played and played- it is dramatic the difference….kids are so amazing.    Daddy took him to the Nature Center just to get OUT (when he’s sick, he doesn’t want to go anywhere or do anything- so lots of sitting and rocking and movie watching).  He doesn’t regress when he’s sick but he sorta goes in shell- and it’s like a veil is lifted when he’s well again- it is SO fun to see!  He plays a lot of catch up between illness setbacks.  He amazes me all the time.

1 comment:

  1. Praying for your sweet little boy! Wishing I could live closer to help in any way!

    Fpies mommy Stacey of Jake