Hunter Syndrome 19 Dec 2006 A Decision is Made So we’ve made a decision. ERT. And there’s a whole lot of emotions which go along with that decision. It is possible that one day Ryan and I may have… mcfadyena
Hunter Syndrome 15 Dec 2006 My floating Head… Well, we’re back from our appointment with Dr. Schultz and we have still made no decisions. This is not a bad thing, we actually kind of expected it. I just… mcfadyena
Hunter Syndrome 07 Dec 2006 Conversation with Dr. Kurtzberg I spoke with Doctors Kurtzberg and Szabolcs this morning from Duke. Where to start...if Avery is not a 6 of 6 match, she thinks that there will not/should not (I’m… mcfadyena
Hunter Syndrome 06 Dec 2006 MPS Society Fundraising Letter This is the letter that Kirsten Harkins and I wrote for the Canadian MPS Society's Annual mailer. Click here to read the letter. mcfadyena
Hunter Syndrome 06 Dec 2006 A Little More Transplant Info We met with Dr. Stockler today (Trey also got x-rays to check a ridge on his head, that could be craniosynostosis...which Dr. Stockler didn’t seem concerned about and neither are… mcfadyena
Hunter Syndrome 01 Dec 2006 Silk FM Radio Marathon Participation helped to raise funds for the BC Children's Hospital Fund. Click on the play button to listen. [audio:http://treypurcellcom.nationprotect.net/audio/radiothon2006.mp3] mcfadyena
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
