October 24, 2006 mcfadyena

Duke Update

So we have a few updates. Our appointments at Duke and UNC are finally booked, thanks to our awesome doctor up here, Dr. Stockler, and the great staff down at Duke and UNC. Just figuring out what tests Duke wants to do/re-do, after reviewing the tests Trey has already had done, has been crazy. But it has worked out well for us because when the usual testing for CBT assessment takes 2 weeks, they’ve fit it into 3 days…and fit it into the schedule we had before we were even considering a CBT. Anyways, Trey has bloodwork and an appointment with Dr. Muenzer on Nov. 1, an appointment with Dr. Escolar on Nov. 2, and an EEG and appointment with Dr. Szabolcs on Nov. 3. Even better, my mom is coming down with us to help with the little ones. On a bit of a downer note, I got a call from Bob Nakagawa’s office. Apparently he is no longer able to talk with me tomorrow, so we have rescheduled until Monday, October 30. It’s not a huge deal to us because as long as we have an answer from him before we go to NC, we’re happy. We can’t make any decisions or do anything on the ERT front until we get back from NC anyways.


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!