Sunday, December 25, 2011

Rest in Peace Colin Our Friend

On a day of great joy and celebration for the Miracle of Christmas, we are given the sad news of the loss of a friend. For you who have followed this blog through the years, you know how much of an inspiration Colin was to Bailey and our whole family. And I thank our nurse Dave for introducing us to Colin that late night on the Heart Center shortly after finding out that Bailey had been listed for a heart transplant. Colin, a heart transplant recipient himself, took our whole family by the hand, together with his friend, Brandon, and led us through an adventure of a lifetime. As Josie said earlier today, "Colin and Brandon made being in the hospital fun." It takes a special person to be able to do that. Colin, I hope you know just how special you are to us. Your short stays at Riley were timed perfectly to lift Baileys spirits just when she needed it. Those nights when you weren't allowed to see each other for medical reasons so you would play Battleship over the phone. We attended the Christmas and summer transplant parties together til Bailey was fnally kicked out of the group for not having received a transplant. You would come visit at the hospital and we would talk for hours! All the while you were building hope and confidence in Bailey and our family that all would be "normal" after transplant. God had a different plan for Bailey and she was able to come off the transplant list without receiving a new heart, but that in no way lessened the impact that you had on our lives. We will forever cherish our memories together. Thank you for being our friend, brother to my girls, and hero to us all. Love and miss you always.


Friday, December 16, 2011

FDA Approves Berlin Heart

What an amazing day for children everywhere! The FDA has approved the Berlin Heart for use here in the U.S. to help save the lives of children with severe heart problems who have no other option available to them. Used usually as a bridge to transplant to keep the children alive until a donor heart can be found and matched, Bailey's heart was able to rest and grow stronger while on the device and she was able to be removed from the transplant list and sent home with her own heart. This was 6 years ago. We are celebrating and praising God that the FDA has heard the doctors' and patients' pleas and have decoded to give this precious gift of life to kids. My hope would be that no child would ever need this device. But we don't have that kind of control over happenings here on this crazy earth. So in the likely event that there will continue to be kids out there who need the assistance of a Berlin Heart, this is a joyous day!! The device doesn't have to be ordered from Germany and applied to the FDA for use on an emergency and compassionate basis. It can be ready and waiting for the arrival of those precious kids who are facing the possibility of death at much too young an age. My God we are blessed. Thank you God for answering our prayers and thank you Berlin Heart and all the doctors and medical staff at the children hospitals all across the U.S. - including Dr. T and Riley Hospital - who made great sacrifices to take part in the study. You are our heroes!!!