Another very LONG day
Today Addyson had her three hour sibo test. She has had this test multiple times. We were repeating to see if she needs a different med due to becoming antibiotic resistant. She was negative for bacterial overgrowth so that’s a plus
We also met two amazing families today while doing the sibo test. One family is following down a very similar path to us and the other family has a niece who is affected by fevers. We filled them in on fever disorders. They were so thankful. We hope this can lead them to getting answers for their niece. Their daughter was also there for gi issues and we hope she gets results that will provide her with some answers. Love when you meet other great families in the waiting room.
Her bloodwork has some issues so gi and cardiology need to chat some more
AADP clinic: very very long but went ok. We will see them again in two months (virtually). Gi agreed to some new overnight routines that will hopefully help with the weight issue. We shall see. We also had a discussion with the team that their goal and our goal were not the same and that our goals and Addysons goals need to be guiding the plan, not their goal that we disagree with.
Beaming with hope 