I forgot to mention that a few weeks back, Trey, Ryan, and I met with Dr. Stockler, the Biochemical Disease doctor who oversees Trey’s care, as well as Trey’s occupational and physiotherapists, Gay and Iris. Dr. Stockler initiated the meeting to discuss what they’re doing with Trey’s OT and PT and why. Gay and Iris are amazing because they are very humble and willing to collaborate, yet they are highly experienced and knowledgeable (they have won many awards for distinction in their field). They have never worked with a child with MPS before, so they have emailed Dr. Muenzer and Dr. Escolar, as well as spoken with Trey’s doctors up here about MPS II and their findings in Trey. It was a great meeting that gave Gay and Iris (and us) additional information and direction. Because MPS II affects bones, joints, and connective tissue all over the body, Gay and Iris have been keeping watch on all of his joints, with the aim of maintaining range and keeping everything functional. Dr. Stockler, having worked with older kids and adults with MPS II, suggested keeping an eye on his whole body, but paying close attention to his hands. This is where, she said, most older kids and adults have the most trouble; with fine motor activities, such as writing, doing up buttons etc. The hands have a huge impact on day to day life skills and Dr. Stockler wants to do everything she can so that Trey can be an independent person. She wants Gay and Iris, as well as Ryan and I, to do whatever we can to maintain and improve the range in Trey’s hands.
