Molly is doing well at the moment. At my last post she had fallen at school and broken her femur. She ended up bending the rod. There are no plans to do anything at the moment. Dr. Esposito said that kids often do fine for a while with a bent rod. It does mean it will probably not telescope (grow) anymore, which will mean we will want to replace it in the next year or so. I am happy it wasn't anything that needed to be taken care of right away. She is back to walking, but just short distances, and is our happy girl again. She was having a lot of fatigue and chronic pain and it lasted longer than the time it should have taken for her arm and leg to heal. We finally realized that she was needing her infusion medication a month earlier than we had expected. It had been almost 5 months since her last infusion. She has switched from Pamidronate to Zolendronate (or Zolendronic Acid) over the summer and it is supposed to be given every 6 months, but 5 months seems better for Molly. We had a great Christmas and she came back to school after the holidays feeling so much better and has been able to go for the whole day again.
Molly had her birthday on January 13th and had a wonderful party with friends. She planned most of it herself :). The girls decorated heart-shaped glass vases with paint pens and then selected fake flowers for their own bouquet. The girls had a blast and the vases were adorable.
Molly has started reading the "Bob Books" (early reader book series) and is so proud of herself (as are we). This has been such a fun year to watch her grow. She is writing more and more, started reading, and really is just absorbing everything they are exposing her to at school. She has made some great new friends in her class and looks forward to school everyday.
We are still working on finding a way to get a pool in our backyard for Molly. We have been given some generous donations and are almost halfway to our goal. We have contacted Make A Wish and are hoping that with the donations we have received and their help that we will be able to make her dream a reality. Fingers crossed :)
More updates soon I hope.