Day 3 post op – rare disease day

Addyson is having some pain this evening Hoping it’s just that she overdid it today. She keeps forgetting that her body still needs to rest.

Rare disease day is always a reflection. A reflection of how far we have come, where we are and what we might have in the future. Right now we are so thankful for Nih and the clinical trial for addysons fever disorder. Because of it she is fever free

Her Gi issues are another ball game. We have tried so much and honestly have no real idea of the future. I mean it’s either keep the ileostomy or one day reverse it, but who knows if a reversal will work. So many unknowns. Still lots to figure out. Today addyson didn’t eat much and drinking has been a challenge. We will keep pushing.

Her cheer staff wore “coach of a rare disease rockstar” shirts tonight…thank you!!

At the end of the day we are addyson strong and we will keep pushing!

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