A little bit happy, a little bit sad

I spoke with Lucy's doctor yesterday about our future plans with food. We've made the decision that further food trials will be put off until August at the least. At that time we will repeat all of Lucy's allergy testing, blood work, and get a weight check before making the final decision to move forward.

I feel relieved we don't have to do anymore for a while. All the anxiety about her health and weight can go to the back of my mind and we can focus on normal things like summer vacations.

On the flip side I feel sad that this year it is likely we will make little progress with food and Lucy will move past her 3rd birthday with no food. Every year that passes with a strict elemental formula diet, there is a greater and greater chance Lucy will not get any food as she moves past an age that doctors would expect her to grow out of anything. The immune system is presumed to have met its full maturity by age 3, and so often, the defects that are in the immune system by that time will remain there most likely forever(or at least long term). Also, for every year that passes Lucy's required formula intake goes up and up to maintain growth and it will become less and less likely that she can take in that amount. At this time Lucy doesn't take in the medically recommended amount as it is, yet somehow manages to stay on her growth curve. A G-tube seems more and more like an inevitable and eventual probability in her future.

For now, I will remain pleased that Lucy has already done far better than the majority of children with her condition. Most of her days are pain free and she enjoys what an average toddler does- that is a blessing and I can't take that for granted. I can see things from the positive side here too. :)