Orthopedic appointment

We saw Dr. Miller today at The Children's Hospital. She has seen some other kiddos with MPS. We wanted to make sure there isn't anything we can do for Rylie's fingers. My friend who is an OT had suggested that we check on a hand splint that Ry could wear while she sleeps (thanks, Erin!). It doesn't sound very practical, but I am more than willing to try it in order to help prevent further curling. The doctor said that she doesn't strongly believe it will help, but there is no data on splinting with MPS kiddos. She suggested we go to an OT hand specialist to see if they would recommend a hand splint. We will try to get that appointment soon. We did get an x-ray of her hands, and it was interesting how rounded her bones are instead of the normal rectangle shape. This is typical for Hurler kids, and I guess it just shows what gag buildup has done to her little bones. Blah!

We are still waiting for Ry's surgery date. She needs new ear tubes and dental work. We are most likely getting Ry's adenoids removed as well. Our ENT wants to remove them since we are still having trouble with the fluid buildup. This will be Ry's fourth set of tubes.