Today Addyson had her spinal MRI and clinic appointment. She also got to see and eat lunch with Connor. It will be a few days before we have the mri report but the clinic appointment went good. Our team said we can keep alternating between Boston’s plan and Hopkins plan. Overall we still need the gi at chop to help manage her flush protocol and the motility disorder part. Our surgeon said that he is still concerned about her amount of stool and the size of her stomach. He said it’s clear her colon is not functioning well. He said he agrees with Boston’s diagnosis just not all of their treatment protocol. We will keep pushing forward but are at a standstill till we get to chop.
Beaming with hope 