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.