Wednesday, July 20, 2011

Back from Montreal

Molly and Sarah were gone for the past two weeks. First visiting family, and then seeing the OI experts at the Montreal Shriners.

When they left, Molly wasn't really standing or walking much, recovering from her fall a few weeks earlier. When they got back, Molly has been walking all over the house without even using a walker again!

While at the Shriners, Molly switched her infusion protocol to a different bisphosphonate. Previously, she was getting pamidronate every three months, with a long infusion split up over two days. She has now switched to zoledronic acid with a 30 minute infusion once a year! This new drug works in the same way as the previous one to prevent the body from breaking down bone too quickly.

While at the Shriners, she also had some new xrays. We learned that she has a compression fracture (wedging) both in her back and her neck. She had been complaining quite a bit about neck pain for the past months, and we were never quite sure what it was. She also has some acid reflux, so we were never sure if it was her throat or bones that were hurting. Now we know that it was probably a bit of both. They were surprised that the wedging in her back had not improved since last year, so there were some new xrays taken to start tracking this going forward.

Another new improvement is that Molly can now swim in the water without any floatation devices! I've heard that she can now swim the whole width of a pool by herself. I've seen her do it in the hot tub, and can't wait to see it in a pool.