Addyson has a Hopkins appointment this week with dr nasr (her surgeon). We are hopeful this is her last Hopkins appointment until we go to Boston childrens hospital. Ideally at this appointment If her image isn’t great we would like a plan. Not a plan of just increasing the flush volume, as we have done this and it’s not effective. We would like an understanding of why the flushes are not proving to be effective. We are 99% sure this is due to motility but that cannot be confirmed until the testing is done in Boston. We have to realize that the daily flushes are not a fix to her disease it is just a management tool that will need tweaking along her journey. Today addyson is using her new pump that she received friday. we are hoping this helps although we know needing the pump means our flushes are not effective. 😔
Beaming with hope 