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!"

Trick or Treat!

What a day busy day this little puppy had! It started with trick or treating with my preschool friends around campus. Boy did we score a ton of candy and Halloween toys! Then Mom, Dad and I went trick or treating in the evening. We went to a nursing home that was hosting a Halloween party with trick or treating in the resident's rooms. Mom and Dad thought it would be easier for me to walk around with my walker. It also gave me an opportunity to spread some of my own special Halloween cheer! There were alot of balloons there so I was a bit distracted by it all, but still managed to treat everyone to some smiles. My leg has been hurting again which is really confusing Mom and Dad...and me to if you reallly want to know the truth! Because of that, I didn't do alot of walking while trick or treating...instead I rode on my walker like a skateboard and let Dad and Mom push me around. The very best part of Halloween was getting home to check out all the things in my treat bag. My favorite candy this year was the Whoppers! Check out my video. This year I learned what monsters say!

EEG Time!

Today was time for my routine EEG. The doctor said I needed to be "sleep deprived." Mom and Dad say they know what that means every day! So...last night I got to stay up REALLY late! Dad took the late night shift while Mom hit the hay so she could get up early with me. Before we went to the hospital, Mom and I went to see Tia Betty. It was great seeing her again. She took us to the park to play so I could get extra tired! When it was time to get hooked up to all the wires, I stayed very, very still. Can you believe I had ALL of those things stuck on my head! Then it was time for the sleeping part. I fell asleep fast!
I wonder if I'll get to sleep during all the tests I'll be taking when I start school. Seems like a good plan to me! In a few days, the doctor will call Mom to tell her how my brain waves looked. We are hoping that with the clinical trial medications and having started neurontin awhile ago for the pain in my leg, my EEG will look great! Keep your fingers crossed! But now it is time for us all to get some sleep... enough of this sleep deprivation!

The Great Pumpkin Patch

Dad, Mom and I went to the pumpkin patch on Saturday. We searched and searched for the perfect pumpkin! Ended up finding three perfect pumpkins! Can't wait to dig my hands inside! I love how the slimy stuff feels between my fingers! While at the pumpkin patch we met the coolest kitten! The kitten thought it was funny to keep going around and around between my legs! He was so friendly...I think Dad even had a brief moment of thinking a kitten would be an okay pet! I'll keep working on him...maybe someday!

My Visit to Bishop's Castle

I saw the most amazing castle yesterday with Uncle Bob and Aunt Frances. They drove here all the way from South Dakota. We drove up to Rye, Colorado to see Bishop's Castle that has been built by one man ALL BY HIMSELF! It is an amazing site to see. I climbed to the first level with the help of Mom and Aunt Frances. I thought it was alot of fun but they said they were nervous! Mr. Bishop was there and so we talked to him awhile. He is a fascinating man! We all think that Grandpa Parke should come see the castle. Even he would be impressed by the detail and massive structure Mr. Bishop has built. After we visited the castle, we had lunch at a small mountain restaurant. The day was alot of fun. Thank you Uncle Bob and Aunt Frances for coming to visit me. I hope you come back soon. Maybe the moat will be done at the castle!

Hello Fall and Hello Big Girl Panties!

Fall is definately in the air! Whenever I see a small pile of leaves beginning to form, I just have to walk through it! I can't wait until ALL the leaves fall! The crunching of the leaves underneath my feet and walker wheels is way to cool! Tonight I helped Mom put up some outside Halloween decorations. My favorites are the orange lights and the big skeleton sitting in the rocking chair on our porch. I've already picked out my Halloween costume! Bet you can't guess what I'm going to be! You're right...a puppy! I've been practicing wearing it but I'm not going to show you until Halloween! Mom says we are going to the pumpkin patch soon. I'm going to try to find the biggest pumpkin ever!
Guess what! Since I turned four I've been wearing big girl panties all day long. Most days I go all day without an accident as long as the big people remember to take me. Sometimes I give'em a break and tell them I have to go but usually I make them work at it! They think they are training me...boy do I have them fooled...I think I've got them trained pretty good! Until next time...stay dry!