Heart of Beckett

UPDATE (5/13/13)
Well according to both Jonny and my mom, Beckett has rocked it today. I was at work, so when Jonny had to leave early for school, my mom stayed with Beckett until I was able to get here. They said he has been so happy when he was awake, just smiling and playing. I always love to hear that. He was held a lot through out the day, and sleeps so good because he’s comfy. They continue to be able to bring down his oxygen; currently it is at 34%, and every one says he looks great. They did wean his Fentanyl today, but this time did not increase his methadone. They are prepared to make adjustments should they need to, but we are hopeful Beckett will be able to tolerate the change on his own. He woke up shortly after I arrived so I was able to give him his nightly bath and get him all tucked in for bed. It wasn’t more than 30 seconds and he was already sleeping. I just love knowing he is so comfortable and sleeping well when I leave. So we have had a long string of good days. As we have said before this often puts us on edge waiting for some sort of setback, but I truly believe we are on the way up, and we are going to continue in that direction. As always, we are praying for that to be true.
With that being said, even when we have good days with Beckett, we are constantly reminded that there are other people struggling around us. It just so happens that one of those people is my Uncle. I was informed today that last night he suffered a massive heart attack and is currently in the ICU. Unfortunately I have yet to really hear any details. So as you remember Beckett in your prayers, I ask you remember him as well. Thanks for the constant support for Beckett and our family as a whole. Good night.

— with Jonathan Rupp at Riley Hospital for Children at IU Health.