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, August 26, 2010


This week brings celebrations in a few forms. Our 2nd son's birthday was the primary focus of the week; and so for that- we tried to give him as much "FPIES free" time as we could manage (while still managing little man's care). He had a pool party with friends, dinner out with the family, and a whole day of fun with friends again today. It has been a fun-filled party celebrations week!

We have cause for MUCH celebration for Little Man as well because after 8mo.of searching and 12mo.of pain, we have found his baseline!!!! Little man has not thrown up in months, he has not had pain unless we do the Neocate, he runs, he plays, he explores, he learns new things, he gives hugs and kisses every chance he gets, he jokes with his brothers, he plays hide-n-seek, he giggles and giggles, he eats his homemade formula well, he falls asleep on his own, oh- did I mention he is NOT IN PAIN?! We are SO happy about this but we have reserved enthusiasm because now some of his doctors are questioning his nutrition. Questioning it because he is on a homemade formula. I have written to the company, and I have found some additional products on their website as well that I intend to utilize for a more complete/optimal nutrition formula -- that we intend to only be the base of his diet as we hope to get started on some food trials soon. We still plan to proceed with Millet grout, introduce grass-fed Lamb and then spinach. After that, we don't know- this will be his tiny menu for awhile -- if he "passes". This would give him something to have at each meal with the family, something to chew on and practice good oral motor skills, and a good nutrients to add to his current formula only diet.

Little Man has more lab work tomorrow, we can only hope that his labs show signs also of his GREAT IMPROVEMENTS over the past few weeks. Sleep well (little man is!)


  1. He's soo cute Joy, I know you worry about his weight but he looks great, not skinny at all.
    Love Suna
    P.S Sorry the Advance didnt work out Sigh, but soo glad he seems pain free.

  2. Actually I don't worry too much about his weight- the doctors do more. I worry about trends and his trend is consistent where he has periods of no gains following reactions and then good gains when he is doing better -- I see that but not sure if they do; but I'm the momma so that is what matters! :) He isn't terribly skinny- just lacking rolls or whatever but none of my boy ever had rolls because they are all tall. I am going to have them check a length at next weight check- betting that will shed some light on his slow pounds gain -- because he is growing in height and also because he is an ACTIVE little boy now!!

    Thanks again for the Advance, it was worth a try and I'm glad I did. His reaction was short-lived because I recognized it for what it was (and has been in the past). I know 3hrs of screaming in pain isn't short-lived in our lives but in the grand scheme of things in his life it is!! I sent you a card in the mail- so hope it arrives safely. We will always be grateful for your support....from half a world away!! Wow!