Thank you so much for the wonderful feedback on the blog. It was great to have so many of you receptive to this way of communication and info. sharing of Eden's updates. Now we just have to stay on top of it!
I received lots of questions from you and in thinking of how to respond, I realized I could do so by describing the event we attended this last weekend. Sunday was the 9th annual Donor Dash in Denver's Washington Park. It is a 5k run/walk to raise awareness of organ and tissue donation as well as honoring the families of both donor and recipients in the local area.
(...So, yes, I am still running - even getting Brian out more these days. Once we reached the four month mark in waiting for Eden's heart (which I believed to be the longest it would be), I stopped running every day and have started distance training instead.)
--See Eden running across the finish line.
We had a good time at the race. Since Brian was out of town, Eden and I recruited some friends as support to come run with us. We also ran into several other families that we have gotten to know during our weekly visits to TCH (The Children's Hospital) Heart Institute - our current home-away-from-home, as well as many staff members. As difficult as it was to hear the stories of other families, it was so great to feel as though we are not alone in this journey. Many people run in teams to recognize their loved one or with notes on their backs honoring their friend or family member's life. I already have a vision of our team name next year... Eden's Angels (or something to that effect!).
There are currently over 1700 people waiting for an organ in the states of Colorado and Wyoming alone, most of them for kidneys and livers. Hundreds die waiting every year as the average list time is 5 years (for adults). Wow! I realize that I now have a rare perspective, but it is still staggering to know how few people are willing to give their organs (and/or their children's).
--This year's team: Megan, Jeremy, Zander, Eden, Kera and Maribeth.
(...So, if you asked us if there was anything you could do? Think about your beliefs and willingness to donate your organs. And share it with your friends! The cutest slogan I read all day was "Recycle Yourself")
Yes, Eden has now been waiting longer then the estimated time we were given. Obviously, there is no true way of knowing when the surgery will happen or how long her current heart will last. If you asked about her placement on the list... she is a 1b. There are 3 priority levels, 1a, 1b, and 2. Her current health status is a double edged sword. On the one hand, we are so grateful for her strength and energy, however it is not enabling her to be bumped up in priority.
For now, we are still waiting; within an hour of the hospital at all times and cell phones in hand. We will be sure to let you know as soon as possible. Well, I will be a complete wreck, so Brian will have to take over for awhile.
Thanks again for all of your wonderful comments and support.
P.S. Turn up the volume on your computer... I've added music!