Hunter Syndrome 17 Nov 2006 Life Some days it occurs to me more than others that sometimes life just isn’t easy. Today was one of those days. The morning was fine as Trey’s Speech & Language… mcfadyena
Hunter Syndrome 15 Nov 2006 Tube surgery moved up Trey’s tube surgery has been moved up from November 29 until this Monday, November 20, thanks to our awesome and wonderful Dr. Moxham. We explained to him that the sooner… mcfadyena
Hunter Syndrome 10 Nov 2006 Our Government said "Yes!" Trey’s ERT is funded!! I spoke with Bob Nakagawa today and he was pleased to tell us that our government, through BCCH, will pay for Trey’s ERT. This is a… mcfadyena
Hunter Syndrome 03 Nov 2006 Final Appointments at Duke We have finished our final appointments down here and are exhausted. Trey was up last night until 12:30 am and we woke him up at 4:30 am so that he… mcfadyena
Hunter Syndrome 02 Nov 2006 Appointment with Dr. Escolar There’s not a lot to update today. This morning we saw Dr. Escolar. We were there for 4 hours. Her team did another standardized test, one which she likes best… mcfadyena
Hunter Syndrome 01 Nov 2006 In North Carolina Here we are in North Carolina. We are exhausted, but well. Today Trey had vitals done and blood taken at Duke Children’s hospital. By far the most exciting part of… mcfadyena
Hunter Syndrome 30 Oct 2006 More Thanks Last night when I was thinking about all the people who have gotten us to where we are today with regards to our diagnosis, I wanted to make sure that… mcfadyena
Hunter Syndrome 30 Oct 2006 No answer regarding ERT funding Assistant Deputy Minister of Health, Bob Nakagawa, did not give us an answer today regarding the funding of Trey’s ERT through the BC government. We are very disappointed. He had… mcfadyena
Hunter Syndrome 29 Oct 2006 In a Writing Mood I don’t have too much to update, but I’m in a bit of a writing mood, so I thought I’d tell you about the little that is going on. Dr.… mcfadyena
Hunter Syndrome 27 Oct 2006 So Frustrating This whole world of medical services, funding, and the Canadian Health system in general is so frustrating. It is like no one cares that Trey is this beautiful little boy… mcfadyena