The Ups and Downs of My Day

Today started out way to early! Usually I get to be the one to wake up Mom, but today she woke me up at 5:00 AM so we could make it to Denver. Mom and I were on a panel to talk to health care providers about how to deliver difficult news to families. I thought it went pretty good. Mom had asked the parents of all my friends on the AS listserve about what they thought would be important to share so that really helped. I had quite a bit to say throughout the presentation. Mom told them she was always excited when I talk...just today I sometimes talked when it wasn't my turn! Mom says I need to learn how to whisper. By the time class was finished, I had won them all over! Some even stayed after class so we could play a bit and learn some more about AS. One student even thought he might know a little girl with AS whose parents hadn't heard about AS yet! I hope things work out for her and her family in regards to getting a diagnosis.
So now for the down of my day. My leg has really been hurting alot the past few days. It hurts to walk much at all. We saw the man who checks my orthotics today. He said they looked like they were still fitting really good so at least we know that isn't the problem. I agree with Mom...when you are four, you shouldn't have to be in so much pain. Mom is checking into maybe seeing someone at the Texas Children's Hospital in December when we go for my clinical trial follow-up. We are waiting to hear back from my doctors at The Children's Hospital in Denver to see if they have any ideas about how to make the pain go away again.
For now..I'm going to go to bed. Which reminds me, I didn't ever tell you I've been sleeping all by myself in my own full size bed! I decided two years of sleeping with Mom and Dad was enough for all of us! Every once in awhile, I call Mom in to join me in the middle of the night, but most of the time I make it all the way through the night! Okay...its off to dreamland for me!