mcfadyena

There is an editorial in today’s Vancouver Sun, in response to the article Pamela Fayerman wrote about Trey in yesterday’s paper. Here’s the link: http://www.canada.com/vancouversun/news/editorial/story.html?id=74897f7e-c606-4f73-837d-053d482d5c0d&k=27496. I have spent the day…

We were overwhelmed today with love and support from so many people congratulating us on Trey’s successful first treatment and the front page article in the Vancouver Sun. Click here…

Today was Infusion #1. So great. Sitting here typing, I wonder what the enzyme is doing in Trey’s body right now. I wasn’t totally clear on exactly what the ERT…

Although I have already thanked a number of people for everything they have done to help get Trey ERT, I have not yet thanked the scientists and the drug company.…

Trey will begin ERT on Monday, February 5, 2007. When I first found out the actual date, it wasn’t a big deal. We had just gotten home from KinderGym and…

Trey had a successful VAD surgery this morning. We were in and out of the hospital in four hours and there were no complications. Trey was not intubated, he had…

Last night was a quiet and fun (and a bit lonely) night. Trey had a sleep study at BCCH and Ryan took him (Ave is still breastfeeding and only one…

Ryan’s cousin (she has 3 kids of her own) sent this to me this morning. She saw it on a forum she participates in and I want to share it…

We found out today. Special Access has been approved!!!!!! I am so glad it only took 2 days. I’ll start from the beginning. This morning we saw Trey’s ENT, Dr.…

Just frustrated waiting over here in Vancouver. Bill Mercer, the man who is helping us get Trey’s ERT from the Pharmaceutical Services Division of the Ministry of Health, is being…