Out and about New York

Dylan is feeling really good today. We spent the day showing my brother, Rick and nephew, Odin around New York and we took a trip to the Central Park zoo. Poor Odin fell over at Central park and we had to taxi it back because he was having a hard time walking, but I am sure he will be fine by the morning. To be honest I was so tired that having an excuse to take a taxi back was great! We are all very tired now and plan to sit back and relax tonight. My brother on the other hand is still very excited about being in New York and has taken off to check out some CD & book stores. The boys are happy playing together in the room and I am about to curl up and read a book. Dylan has his Vancomycin antibiotics every 12 hours IV in a sort of ball contraption that I hook up to his lines and it infuses over 1 hour. The ball has an IV line that I attached to Dylan and it deflates over the hour, it's really very cool and innovative. We will return to clinic at 8am Monday morning for TPN blood tests and at a guess Dylan may need some blood and platelet transfusions, or he may even start chemo if his counts are good enough. It has been a very hard week at the Ronald McDonald House for many of us parents. We lost Jay this week and another family received very bad news about their daughter's condition. The most distressing for me is Bailee’s condition right now. We were with Bailee at the Nascar races and she did so well keeping up with us all. Bailee has leukemia and finished a bone marrow transplant last year. She was admitted the earlier on the same night as Dylan and I would often chat with her mom Robin and say hello to Bailee as they were in a room next to Dylan's. Then breathing problems started and she was transferred to the POU but she was sitting up and not too bad. Later that night she was transferred to the PICU where her heart stopped, and they had to revived her. She is in a stable condition now but she is not out of the woods yet and they still are unsure as to what happened. I just can’t believe how these kids can be fine one day and go down hill so fast, it is so damn scary.