Thursday Update

Pretty uneventful day here at Egleston. On one hand that is a good thing as Audrey's rhythms stayed pretty stable and she took all of her medications well. Her wide and bright eyes were back today and she was in a great mood and very lively all day.

On the other hand, I dont feel like we made very much headway toward our decision on a plan. Our EP spoke with a couple of other doctors, one in Italy who is one of the biggest proponents of the cardiac denervation and one in NY who is the EP for a family that we have kept in close contact with as their 4 year old son has the same condition and has followed our same path. Both gave some interesting input that we are taking into consideration. We were hoping to have another meeting outside of the CICU in one of their offices to have further discussion with a couple of the EP's but didnt get the chance. Almost every minute of the day and every conversation Amanda and I have, we are talking through our options and feelings around the procedures. It's so very intense and consuming for me right now as we attempt to make the right decisions for Audrey. As morbid and harsh as it sounds, the impact of these decisions could truly be life or death for our sweet little girl. We are trying to make certain that we talk to as many resources as possible and challenge our doctors on the options both presented to us and not presented. It is such a fine line as we want to ensure we do not offend our closest doctors, that we respect and value greatly, but also make sure we do our homework as Audrey's parents to explore the pros and cons of every option on procedures, locations, surgeons, etc.

We did get moved to the step down unit at the very end of the day so Audrey and I are sitting in our own room now with a couch/bed in the room. She was able to get some of her lines removed and has telemetry for her heartrate monitoring which allows us to take her out of the room and all over Egleston now, all while her heartrate is still being monitored. She is now able to crawl around in our room, sit in a high chair for meals, and play in a playroom across the hall. Crazy coincidence, it ended up being the same exact room that we had a year ago after Audrey was born. This was a huge step for Audrey as it was becoming painful to keep her held down in the CICU once she was her self again and had her energy back. Avery and Ryan are dying to come back down to the hospital to see Audrey, and visit the almighty gift shop.

Again, we sincerely thank everyone for all of your well wishes, prayers, and assistance.

- Mark