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 all the joint and range of motion issues boys and men with Hunter’s can have. I think it is also due to the fact that about a year and a half ago Dr. Stockler had a bicycling accident that broke some bones in one of her hands. She had some related problems and pain and realized how debilitating hand issues can be. Overall, Trey is doing great. His knees are spectacular. In the past Trey’s knees have had trouble getting to 0 degrees, but today they were past 0. They were hyperextended for the first time ever. Trey’s shoulders are also doing great because he’s been standing almost always, strangely to us, with his hands behind his back. Apparently this stretch has done wonders for his shoulders! Trey’s elbows and hands are still tight, although not to a debilitating range and also not to a range that his physio, Iris, would do anything about. His pincer and grip strength is gaining incredibly well. Dr. Stockler seemed happy and impressed. Gotta say, life is good.
