Yesterday we all joined Addie in her room while we waited for the plane to arrive from Seattle to take her to CHOP, Children’s Hospital of Philadelphia.
Addie and Ryan flew out at 6 pm last night. After stoping in Wisconsin to refuel, they safely arrived in Philadelphia around 11:45. Addie will undergo a special MRI of the lymphatic system on Monday. This will allow us to see where the leaks are in the plural cavity of the lungs. The specialist there is optimistic that he can help Addie. Last week I contacted him, I was seeking advice from the LGDA support group- and his name came up. Addies conditions have not improved and her output has increased. After consulting with him and the doctors here in Missoula we decided it was time to make the move. We are very grateful that it worked out and that we were able to get Addie to CHOP. We are ever so grateful to the amazing staff at Community Medical Center – their care, their love, their advocacy. If I didn’t love my job so much at Target Range k-8, I probably would be seeking out employment on the Pediatric floor at Community. We are also very grateful to the doctors at Colorado Children’s Hospital who have continued to support us and communicate with us about Addie’s care, as well as the LGDA support group who has continued to provide me with information about their experiences allowing me to navigate what steps we should take and when.
Love to all, keep keeping us in your prayers – I will keep you updated.