Friday Update

Audrey enjoyed her first full day of being in step down rather than the CICU. With her telemetry monitoring she is fully mobile and able to crawl around and be active again. The nurses setup a nice mat with a blanket on it for a play area with her toys. She is her old self again as far as her activity level, mood, and eating again. She does get pretty fired up with each new person that comes into the room to take her vitals or an ekg. We're not sure if it is due to a new stranger complex at her age or just being sick and tired of another machine being wheeled in to poke and prod some more. I definitely couldn't blame her if its the latter.

Avery, Ryan, Grandmommy, and Granddaddy came down to visit Audrey today. She loved seeing their smiling faces and we took all three kids for a ride in the wagon outside and around the hospital. We ran into the hospital assistant golden retriever dog which the kids got to pet as well as the helicopter transport pilots were getting some coffee and took some time to talk to the kids and give them some pins. Avery and Ryan also got to meet with the child life specialist who sat with them in the playroom and did crafts and explained to them a little about Audrey's condition using some fun props and tools. It was a great experience for them all.

We also feel like we made some great progress today on our research into the suggested treatments for Audrey. Our great friends at the SADS foundation instantly connected us with one of the Long QT experts at the Mayo clinic and we are now working closely with him in conjunction with our CHOA doctors on a plan. After today we really feel like we have consulted with some of the most expert and renowned doctors worldwide in the Long QT field and are much more at peace with the proposed treatment options. Although there are quite a few specifics to hash out still, we currently are planning for Audrey to have surgery sometime next week to replace her pacer with an ICD to protect her in case of cardiac events such as the one she had Monday. We are so thankful to have so many resources such as the SADS foundation, friends in the medical field, and Doctors willing to spend their time to help us determine the best path for Audrey.

- Mark