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, May 30, 2012

It's gonna be a bumpy ride...

ProViMin is started and, as suspected- we are seeing symptoms. At first this morning, I was hopeful it was just because I am watching so carefully- to notice that he woke up crabby and only wanted to sit and watch TV and didn't want me to leave his side, or that his cheeks were a bit dry looking and quite pink, or that he wasn't wanting his bottle or his waffles.... We started the ProViMin last night at 6pm with 1tsp of the powder mixed into his hemp milk bottle, he then got another one at around 8pm, with the same 1tsp. powder mixed in. He woke up around 11pm crying and uncomfortable but we hoped it was just because he was hot as he had fallen asleep covered up on the couch. He woke up at around 4am but a bottle (plain hemp milk) put him right back to sleep. He was awake for the day at around 7am and finally got him to take a bottle at 8am. I put 2tsp of ProViMin in this bottle. The goal is to give him 6tsp. in a day, which is equal to 1/2 a serving a protein. Once we are sure he is tolerating this amount, we will move up with the end goal being 1cup of ProViMin mixed into his formula and foods throughout the day. I suspect 1cup will be hard to get to (A LOT of powder) but we'll cross that bridge when we get to it. For now, we need to convince his body that it does not need to fight this. It is disheartening to see symptoms- however subtle they may seem today- as his safe foods have been safe from day one (no matter the quantity). Hemp milk, the first day he drank 50oz., without so much as a hiccup! Peaches, the 2nd day of trialing them, he grabbed the entire peach and ate half of it - whole and raw...not one burp or any symptoms. With potatoes, he ate a half of a bag of CheeCha puffs on day 1 with no symptoms whatsoever. Today, with the introduction of ProViMin, we have symptoms. Red, red, rashy cheeks, blue lines (signs of cyanosis) around his mouth (most concerning symptom), some decrease in appetite, and a sensitive mood....but nothing over the top or unmanageable. So, we press on and through, starting again tomorrow and working within the 6tsp. dose....until symptoms either disappear or become more clear.

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