FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.
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."
Friday, October 1, 2010
Millet day 2, um...I mean day 5
Yesterday morning, he wasn't thrilled but I got some on his lip and he licked it and then began ASKING for more and LETTING me FEED him!! I was giddy! We had to distract him so I could pull the bowl away (can't do too much in case he would react!). This morning, he wasn't as excited- he was opening his mouth but not very wide. I said to Little Man's daddy who was standing by - "this makes me nervous when he doesn't want to eat it"....to which he leaned over and whispered in Little Man's ear..."it's ok- she would get nervous if you wanted to eat up the whole bowl full too". Yep- can't win with this. Which is why I have been cautiously optimistic all day....super content or reaction tired? Fussy from teething top molars or tummy ache? Achy from an oncoming cold or reacting? Ugh- I did what I do best when I need to be distracted....I cleaned and organized! I got a lot done this morning but then after his nap he was pretty fussy; he settled down through the evening though so will remain hopeful. Day by day, moment by moment.....
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