Jacob & Lili

Jacob & Lili

Friday, October 28, 2011

Settling In...and RICE!!!!!

Life seems to have settled into a routine of sorts. Our walk for CURED was fantastic and really gave Jacob a sense of empowerment. He has no control over this disease or what happens to him but it made him feel good to see so many that support him and other children like him.

Since the walk, we made the decision to take Jacob down to San Diego and have a G tube put in. Now he doesn't have the NG tube on his face so his disease isn't as obvious anymore. It took a few weeks before he was back to running but now he's back to his old ways without worrying that the NG will come out. His scope was clear as well so now he trialing rice, in all it's glamorous forms. He's eating white rice, brown rice pasta, rice crackers, and rice cakes. I managed to make rice pancakes using home made rice milk paired with a brown rice syrup. In two weeks we find out if the rice is a pass. His next food is a debate right now. He wanted to try pumpkin but now I've got him talked into either beef or potato. Beef so he can have hot dogs again. Potato so he can have fries. We will see what the ultimate decision is soon. Exciting stuff in the Maupin house.

Both kids went in for a myriad of blood testing a few weeks. We are pretty sure that Jacob also has Mitochondrial Disease along with who knows what else. Lili, may also have Mito but her doctor things she has Candida. These labs take so long to get back and I'm trying not to think about it and the consequences of these diagnosis. It would seem that EoE is far more complicated then just an food allergy driven autoimmune disease. Other diseases seem to piggy back with it and these doctors need to start looking into this as well. But how many things can you tackle at once?

Both kids are back in school. Jacob has finished a full 2 weeks of school! And both are doing so well with their classes. Lili rocked her 5th grade play as Aurora. I am one proud mom. They have endured so much and seem to just keep pushing through. I'm not sure I could be that strong.

In two weeks, Jacob has his 5th scope and his peg tube will be changed to a Mic-Key button (no more visible tubing). Lab work will come back. I'm sure our lives will be turned around again but we seem to be able to recover quicker each time. Thank goodness for that.

The Maupin's

The Maupin's