This past weekend, Trey, Ave, Ry and I participated in the BC Children’s Hospital Foundation Miracle Weekend. It was an amazing event with tons of stuff for the kids to do and lots of food. Sunday morning we showed up for a photo shoot with the family and then were interviewed live on Global TV about our experiences at Children’s (see video, below). They raised in total over $14 million dollars (“Tacos” better step up!?).
[flv width=”320″ height=”240″]http://treypurcellcom.nationprotect.net/video/TreyMiracleWish.flv[/flv]
The MPS Cup
This coming Saturday, June 9, is the MPS Society’s biggest fundraiser, the MPS Cup. The ED, Kirsten Harkins, and her husband Todd put it on. It is a fantastic event where you get to watch friends and family take the ice with famous hockey players (Ryan and some of his friends played last year) and then attend an awesome Gala dinner and auction afterwards. This fundraiser is where pretty much all the Society’s research money comes from. Last year they raised over $60,000. For details, go to: www.mpscup.ca. I will be speaking at the Gala.
Trey’s Progress
As far as Trey goes, he’s doing great. He had infusion #18 yesterday along with an ultrasound of his abdomen. The changes we are noticing in Trey as a result of ERT are amazing. He’s growing like a weed (he is so tall!!), his stomach is flat as a board when he wakes up in the morning, his face and facial features are much softer, I notice changes in how he moves, he can hear because his ears aren’t plugged with fluid (which is affecting his speech) and he’s so healthy (although he was healthy for quite some time before ERT as well). We haven’t had to miss a week of ERT yet. Life right now is pretty darned awesome. We are so happy to have gotten Trey on ERT as soon as we did. I will never be able to thank everyone who got us here enough. The only medical result we’ve received recently is his electrocardiogram, which was normal. Oh, and Trey’s hernia sutures are healing up well.
I’m Preggers!
And in unrelated news, I am pregnant. We are having a baby girl and she is due on October 29. I have had a CVS and ultrasounds and everything looks good, so we are pretty excited to add a new member to our family, and a baby girl at that.