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
Hunter Syndrome 19 Jan 2007 Sniff, sniff… 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… mcfadyena
Hunter Syndrome 17 Jan 2007 A Good Good Day 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.… mcfadyena
Hunter Syndrome 16 Jan 2007 Still No ERT Start Date 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… mcfadyena
Hunter Syndrome 07 Jan 2007 "Everyone's on Holidays" This is what we keep hearing...We heard it in the summer when the FDA first approved Elaprase and we started trying to get it for Trey, and we’re hearing it… mcfadyena
Hunter Syndrome 30 Dec 2006 Donating Blood Hello. We have no new news on Trey’s front, but I am writing to invite you all to donate blood or sign up to become a part of the Bone… mcfadyena
Hunter Syndrome 22 Dec 2006 Dr. Charlie Peters This morning I spoke with Dr. Charlie Peters, from Mercy Hospital in Kansas City. He worked for a long time with Dr. Krivit (a well known and well respected and… mcfadyena
