We spent some time yesterday at Abigail's EoE doctor.
We made some decisions. Some changes of medicines. And a plan for the fall and next endoscopy.
When I drove Abigail to school later that day she was visibly upset and started crying.
It took a long time to get out of her what was making her so upset.
He didn't really mean it when he said, "what would you like to add?" (for a food) It was just conversation. But Abigail took it literally and was thinking. About to tell him the food she'd like to add back in the conversation changed.
Scott and I didn't even notice it. But she was very sad.
Dealing with a chronic disease has it's ups and downs. Mostly ups for her recently but what we've noticed as she gets older is the emotional component that comes with walking with EoE.
In the beginning when she was a toddler it was about managing her food, the IV, hospital endoscopy appointments and such.
Recently its about managing the pain, the inconvenience of medicines, and not eating out or being 'food normal'.
I know for sure her dr wasn't about to add in a new food group. But she for some reason had her heart set on adding one in.
At this point she doesn't know what ice cream tastes like, or food cooked with butter, movie popcorn, pizza, mac and cheese, yogurt, anything store bought, and on and on and on. We are pretty sure she wouldn't even like those foods. It's been her whole like. But for her I would love to she her have the opportunity to have regular food.
So we love on her extra and walk through this EoE childhood with her, grateful for the gifts it's given us, the lessons we've learned along the way, and the strength of the Lord.
For now this remains...
no tree nuts
and meds galore.