Hunter Syndrome 25 Apr 2009 Welcome to Holland I want to preface the following story with the one change I'd make if it were about my journey with Trey: I don't see Trey as having a disability. I… mcfadyena
Hunter Syndrome 17 Apr 2009 The Intrathecal Trial is Moving Ahead The IT trial is moving ahead. I spoke with Dr. Muenzer yesterday, and he said the following information is now public info and okay to share. I wrote as quickly… mcfadyena
Hunter Syndrome 01 Apr 2009 Another audiology Appointment We had an appointment today to pick up Trey's new ear moulds (one blue and one green). Sara, his audiologist, also decided to do bone conduction tests to see how… mcfadyena
Hunter Syndrome 30 Mar 2009 Decreased the Elaprase Rate After speaking with some parents and finding out the recommendations of doctors from Shire and doctors involved with the trial, we have decided to slow Trey's Elaprase rate back down,… mcfadyena
Hunter Syndrome 29 Mar 2009 Trey is on the Cover of West Coast Families Trey is on the cover of the April issue of West Coast Families magazine and information about our up coming fundraiser, "Time for a Cure" is inside. To view a… mcfadyena
Hunter Syndrome 23 Mar 2009 Cardiology & Increased Rate Trey had an echo, ECG and visit with a cardiologist today, Dr. Human. Although Trey has had a number of heart tests in the past, this is our first visit… mcfadyena
Hunter Syndrome 19 Mar 2009 Trey had an audiology appointment today Trey had an audiology check up today. His hearing is about the same as it was at his last check up in December. To give you an idea of where… mcfadyena
Hunter Syndrome 16 Mar 2009 Speaking of Children A story about Trey is in the Spring 2009 issue of "Speaking of Children," a magazine published three times a year by the BC Children's Hospital Foundation. Click here to… mcfadyena
Hunter Syndrome 04 Feb 2009 It took three tries to get Trey accessed on Monday, the first time using his new VAD. It took three tries to get Trey accessed on Monday, the first time using his new VAD. The first time, Trey’s nurse, the head of the Medical Day Unit where… mcfadyena
Hunter Syndrome 04 Feb 2009 Two Anniversaries On Monday, February 2, we had a party at BC Children’s hospital to mark two years of Trey being on Enzyme Replacement Therapy. For the boys it meant cupcakes, lots… mcfadyena