Hunter Syndrome 30 Nov 2006 HLA Typing: Avery is a match HLA typing was done on our family and preliminary results suggest that Avery is a match for Trey. This means that now a decision has to be made regarding related… mcfadyena
Hunter Syndrome 27 Nov 2006 Waiting I was reminded last night, of another reason why I don’t like waiting. You forget what has become your world, you feel normal for a few seconds or minutes, and… mcfadyena
Hunter Syndrome 24 Nov 2006 Another Week Gone By This week was a bit slower than last week, and hopefully next week will be even slower. Trey had tubes put in his ears on Monday, and although there is… mcfadyena
Hunter Syndrome 20 Nov 2006 Ahhhhhhhh, the recovery room Trey had a successful and uneventful tube surgery this morning with Dr. Moxham. Tubes were put in and a bunch of thick fluid was drained out. We were in and… mcfadyena
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
