RMH Week 7

Today we begin our 7th week. It is hard to wait while two other Hurler kids have been here for transplant while we battle to get Rylie admitted. We also met a Hurler kid who is here for his one year post-transplant check-ups. Ironically, his hair is nearly the same shade of red as Rylie's. It is encouraging to see him run around and act like a happy two and a half year old.
Thanks to so many of you who have run to Rylie's aid and are ready to take up her cause. Today, we are reminded that despite an unbelievable chain of events that have prevented Rylie from being admitted and beginning treatment, we are blessed to have so many people working on our behalf. We do remain hopeful something will get resolved tomorrow (sounds like a broken record). While our own battle goes on just to get Rylie started, we ask that you pray for several others here at the RMH. Rylie's friend Chance, who one of the other Hurler kids, will have surgery tomorrow to replace his broken central line. This is very stressful for the parents and not good timing as he is constantly receiving medication and nutrition through his line. He is otherwise doing very well at 38 days post transplant and we pray this will not cause any set backs. Also pray for a 6 year old girl here, her first transplant failed and the family is having to go home to wait until her body can handle the next round of toxins before trying a second transplant. There is another girl here who is very much in need of all our prayers. She is young but yet her life experiences have been terrible. Please pray for her and her family as they work through many issues.

Some observations from today: Life is fragile even when we are healthy. Today's weather reminded me that there are only a certain number of "sunny" days in a year. Take advantage of them.

Lyle