Today we had gi clinic at chop. It went well. Overall I’m pleased with where we are.
We discussed her weight. We are going to do a three day food log and follow up with nutrition on a better plan. we did day 1 today so 2 days to go.
Bowel regimen: we are going to increase the daily flush to 750ml and decrease the glycerin to 20. 30 is just too much for her. overall we feel like the surgery was the right move for now and we are still hopeful we can make this work. Gi is on board that we have room to adjust and that we are still ok right now! So the reassurance felt good
Sitz marker test: we have to repeat the sitz marker test, so we will get that done in the next week or two. Just to double check that all is good
Growth: height wise she is continuing to grow so that’s reassuring
Rheumatology: agreed we should keep addyson on the cholocine. The fact of it being an immunosuppressant is still better than the reoccurring fevers.
Beaming with hope 