Another busy day.
It started with addysons cardiology appointment. We found out her echo was abnormal as her aortic root is enlarged. It cannot shrink back however we need everyone to hope, pray, whatever it is that you believe in. We need addysons aortic root enlightenment to stay under 3.0. Hers is close to the cut off and we don’t want to be doing surgery.
After that we headed to her infusion, which went well, with no complications. We got to see her friend Savannah whose infusion was at the same time. They had pumpkin decorating so of course addyson decorated one.
After that we headed to the naval Academy for a swim meet between gw and navy. Ethen is loving team impact and the friendships formed. The coach and the players came over to say hi and check in. Team impact is truly a great organization!
I struggle with addysons current state. She is so strong and doing well if you look at her but internally her body is fighting against her so much. Every appointment seems like the wind just keeps getting knocked out of us. It’s one blow after another. The Dr today said it’s tough because it’s one pipe that’s broke but that pipe keeps causing leaks through out her body. All Randy and I can do is keep pushing for the best quality of life for her. She told the dr today that she keeps asking to sit because she’s so dizzy. It’s just sad that years into this we really don’t have any better treatment than years ago and that’s because there isn’t one.
Beaming with hope 