Getting caught up on blogging

We went to a hand specialists at Children's, and she wants to put Rylie's pinky, ring, and middle finger in a cast that goes to her elbow in order to straighten her little fingers. The specialist measured the finger's curvature, and they measured between 5 to 20%. We will start with her right hand, and the cast will only be on for 7 days. When they take it off, they will measure the fingers again, and if they don't measure at 0% but they have improved, they will put the cast back on for another week. Once we get the fingers straightened again, the specialist will make a splint for her to wear at night (hmmm....I'm hoping this will be easier to put on a 3-year-old than it sounds) to keep the fingers from curving back. We will probably wait until after the holidays for her left hand. We want to continue with swimming lessons, but the cast cannot get wet so we'll have to miss some classes in the next swimming session. We're trying to plan it so that it will be the easiest and less invasive as possible. We're not looking forward to it, but we are very hopeful that this will solve the issue or at least delay serious damage. By the way, we did send Rylie's x-rays and call the ortho specialist (Dr. Van Heest) in Minnesota, and they agreed that the casting and then splinting is the best approach for Ry's hands.

The dentist that Rylie went to is booking surgeries 4 months out. Our ENT does not want to wait this long, and we do not either since we're dealing with hearing loss. So, we're looking for another dentist (with help from our ENT) that takes our insurance and who will work with Children's. Once we get the surgery date, we will call Janell, my friend who works in the genetic clinic, who will coordinate with the anaesthesiologist that we can use. There are only two that I know of who have worked with MPS airways before. Of course, we want one of those doctors. We're extremely lucky to have Janell working for the best thing for Rylie. Trying to coordinate this procedure is starting to feel like getting a healthcare bill passed in Congress.

On Tuesday we went back to Rylie's pediatrician for the first time since transplant. She is a lot closer than the BMT clinic, and we needed to get Ry's next round of immunizations (her 4-month shots). It was nice to see her. I remember someone telling me that if you ever can make it back to your pediatrician you know your kid is doing well. Dr. Bacon was very nice, and she was happy to see Rylie looking so healthy and happy. Rylie showed her how brave she was by barely crying after her shots. I think it really helped to have Lyle join us for this visit. Ry was just so excited to see him that she didn't care it was because she had to get shots.

That's all the new medical stuff. If I don't write it down here, I will forget all of it and wonder what we did the fall of 2009. Everything is starting to mesh together, and I'm starting to forget all of the doctors and specialists we have seen. We continue to feel so blessed with Rylie's health and growth. Thank you for your prayers and support.