mcfadyena

We saw ENT yesterday and Trey will not be having surgery for now. Yeah! After Trey's 3 years of ERT party (a week and a half ago), I tried one…

One more quote for now: "There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a…

Another story I love: If you have ever gone through a toll booth, you know that your relationship to the person in the booth is not the most intimate you'll…

I've always loved quotes. Here's one I just found: "This is my simple religion. There is no need for temples; no need for complicated philosophy. Our own brain, our own…

We had a party at the Medical Day Unit on Monday to celebrate the three year mark of Trey's infusions. I can't quite believe it. Three years. He doesn't even…

Alice laughed. "There's no use trying," she said. "One can't believe impossible things." "I dare say you haven't had as much practice," said the Queen. "When I was your age…

A friend sent me the below story. Its' not MPS related, but it is child and family related and it's so funny and true, I just had to share it.…

Makes me think of Trey. This one's for you, Jen. Deb

Ever since Trey was diagnosed, Ry's been talking about making a documentary about our experience. More recently, he started talking about making a movie. Well, it's been made. "Extraordinary Measures",…

The head nurse at the medical day unit at the hospital has been commenting on wanting to chart Trey's height and weight on a graph for a few weeks now…