Check Out My New Wheelchair!

I got my new wheelchair last week. I had a blast at my first basketball game with my new chair because it was so much easier to run around the arena with my friends. Then over Thanksgiving weekend my cousins (Mason, John and Andy) thought I should drop in at the skateboard park with them! Mom and Dad are pretty boring when it comes to places to use my wheelchair...they NEVER mentioned a skateboard park before! I didn't know wheelchairs could be this much fun! I even took two small spills in my chair but like a true skateboarder...I jumped back on my "board" and hit the half pipe followed by a tight grind! Tony Hawk watch out...there's a new skateboarder in town!

Ouch...This Walking Hurts!

I'm posting a few videos of me walking, mostly so my doctors can see. It's gotten really hard to walk again. I can take five or so steps and then it hurts so I don't like to step on my right leg. Dad was trying to get me to walk so he said "march"...that's why I'm taking some really high steps sometimes. I'm trying to let them know where it hurts. This weekend, when Mom and Dad asked me if I had an owie, I touched my right foot each time. Please say some prayers that we can figure this out. I was planning on doing alot of running around at the basketball games this season! It's looking like Daddy may have to put me on injured reserve...maybe I'll get a medical redshirt!

Hang'in Out at Basketball Practice

I've been going to basketball practice alot to make sure the guys are doing what Daddy tells them to do. We've been going so much that I can even point Mom in the direction she should turn! If she decides to run an errand before going to the gym...I yell at her a little bit just to let her know we took a wrong turn! Friday is the frist game of the season. I'm so excited to see all of my basketball friends again. Mom put a basketball court and lots of other cool things on my Dynvavox V so I'm all ready to cheer for the team and order from the concession stand! Here's to alot of victories and popcorn! Go Thunderwolves!

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!

I Got an Award Today!

Guess what!! Today at school I was presented with the "Snake Check Award!" At our preschool, the teachers do snake checks around the perimeter each time we go out to the playground to make sure there aren't any snakes. Then they review with us the snake check rules which are: 1. If you see a snake (real or fake) step away slowly and quietly. 2. Tell a teacher. 3. Tell your friends to step away slowly and quietly. So anyway...we were out playing and I found a snake and I followed the snake check rules to a tee! He was a 5 foot long bull snake! I told Ms Kem and she called the snake guy to take it away. All of my friends stayed safe because I followed the snake check rules! That's why I got the "Snake Check Award!"