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, August 13, 2010

The Calm in the Storm

Little Man and Mud pies (aka, big brothers) enjoyed running through the "river" created in our backyard from today's storms. The break in the storm was the perfect time to go splashing through the water! Whenever life gets a little too much, take cues from children. Little man has spent so much of his life in pain and discomfort, he doesn't know any different. This is his illness, this is his life right now. We work very hard to assure a high quality of life despite his chronic illness. Little man wastes no time, the second- the split second he is pain free- he is off and running. Exploring, learning, interacting with big brothers, finding new ways to make mommy and daddy laugh and say "good job" (as he claps his hands, so proud of himself for learning new things to share with us.
Little man is a happy boy these days, again. We will cling to this as his baseline. The only thing still hanging around is this carbohydrate intolerance. I can only get about half of his daily carbohydrate needs in his formula because of it. If you know of anyone who is lactose intolerant, this will help to understand what he has.....except his is with any -ose source (sucrose, fructose, maltose, lactose)...all the building blocks of carbohydrates=sugars. There is always going to be a variable in how much he can tolerate. Some lactose intolerant people just have to stay away from straight milk but can have cheese and ice cream, some can't go near either. Little man is somewhere in the middle- he can tolerate (and breakdown) a certain amount of carbohydrate but not too much at one time. We have realized we can not try and put any more in his formla, we need to try and add it to his diet. We are ready for food trials. We feel he is ready for food trials. Besides his hemp milk popsicles and hemp seed cereal and of course ice chips- Little man has not had any food to eat,and chew, and enjoy since the last week of Feb. He has not had anything but formula in almost 6mo!
Please pray this is the calm in his FPIES storm and that little man can finally have a safe little menu soon.

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