Hunter Syndrome 31 Jan 2010 Through the Looking-Glass Alice laughed. "There's no use trying," she said. "One can't believe impossible things." "I dare say you haven't had as much practice," said the Queen. "When I was your age… mcfadyena
Hunter Syndrome 26 Jan 2010 What do you do all day?? A friend sent me the below story. Its' not MPS related, but it is child and family related and it's so funny and true, I just had to share it.… mcfadyena
Hunter Syndrome 22 Jan 2010 A Tear Jerker… Makes me think of Trey. This one's for you, Jen. Deb mcfadyena
Hunter Syndrome 15 Jan 2010 Extraordinary Measures Ever since Trey was diagnosed, Ry's been talking about making a documentary about our experience. More recently, he started talking about making a movie. Well, it's been made. "Extraordinary Measures",… mcfadyena
Hunter Syndrome 12 Jan 2010 Trey's height & weight plotted The head nurse at the medical day unit at the hospital has been commenting on wanting to chart Trey's height and weight on a graph for a few weeks now… mcfadyena
Hunter Syndrome 11 Jan 2010 Home schooling Some of you may know we're home schooling. Because home schooling is not about Hunter Syndrome (all of our kids are/will be home schooled), I've left those details off our… mcfadyena
Hunter Syndrome 07 Jan 2010 My hopes and dreams for Trey, now I wanted to add an addendum to last nights post about my current hopes and dreams. Because, although upon diagnosis my hopes and dreams for Trey were squashed, they're back.… mcfadyena
Hunter Syndrome 06 Jan 2010 Finding Hope I've been inspired by Jen. Her son was relatively recently diagnosed with Hunter's. And in hers words, it's not getting easier. Everyone told her it would get easier, and it's… mcfadyena
Hunter Syndrome 06 Jan 2010 PT/OT Hello again, During Trey's infusion today, Trey's PT (physio) came to see us with Dr. Stockler. Dr. Stockler has been very interested in this part of Trey's care because of… mcfadyena
Hunter Syndrome 06 Jan 2010 Orthopedics & Osteopathy We had an early and long morning yesterday, with a number of different appointments. After a few years of experience, we have started booking our yearly orthopedics check up as… mcfadyena
