Hunter Syndrome 13 Feb 2007 Infusion #2 (yesterday) Infusion #2 was easy breezy compared to #1. We didn’t need a urine sample, the kids (and I) didn’t need to be clean and organized for reporters and photographers, Trey… mcfadyena
Hunter Syndrome 09 Feb 2007 Reactions, hospitals, hernias… what a week! This week was a busy one. Monday night, after Trey’s first infusion, Trey woke up twice with gas, major bloating, and diarrhea (I’ll leave the details out!). We also noticed… mcfadyena
Hunter Syndrome 08 Feb 2007 Kirsten's Response to the Editorial After speaking with Kirsten Harkin’s, the ED of the Canadian MPS Society, she drafted this letter to the Vancouver Sun: Re: Health Care’s successes, like little Trey, pose the challenges,… mcfadyena
Hunter Syndrome 07 Feb 2007 An Editorial in Response to Trey's article 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… mcfadyena
Hunter Syndrome 06 Feb 2007 The Front Page of 'The Vancouver Sun' 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… mcfadyena
Hunter Syndrome 05 Feb 2007 A Monumental Day: Trey's First Infusion 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… mcfadyena
Hunter Syndrome 30 Jan 2007 Thanks to the Scientists & Shire! 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.… mcfadyena
Hunter Syndrome 26 Jan 2007 WE HAVE A START DATE!!!!!!!! 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… mcfadyena
Hunter Syndrome 24 Jan 2007 Successful VAD Surgery 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… mcfadyena
Hunter Syndrome 22 Jan 2007 Sleep Study & a Thank You 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… mcfadyena
