Happy Birthday Jesus!

I had a great Christmas! Grandma and Grandpa Parke were here for a week so I got to play ALOT! I am definately a "Grandpa's Girl!" Even got out of bed all by myself for the first time today just to make sure I could go play with him as soon as possible! There were so many presents to open and play with! I got this round see saw from Santa. After just one day of playing on it, I can now stand up all by myself and make it rock. Grandpa also made it so my new Rainy Day Indoor Playground can hang from the ceiling in my playroom. Pretty soon I'll be swinging from the rafters! Grandma made a great Christmas dinner...I liked the pumpkin pie the best but Grandma said I can't tell anyone that she didn't bake it herself! Dad got me some more moon sand. With all these great gifts, there hasn't been enough hours in the day to get all my playing in! Thanks again Grandma and Grandpa for driving so far so we could have Christmas together. I hope I get to see you again soon!

Texas Children's Hospital Rocks!

Mom and I made it safely to Texas Children's Hospital in Houston. I did great on my developmental testing. I even said "I did it" during my test so that was HUGE! I still have to work on my pronunciation a bit but Dr. Peters said she thought that's what I said! I had great nurses while I was there. This is a picture of one of my nurses. Her name is Sherri and she is very silly! Our secret sign to each other was to shake our arms. She bought us both matching bells so we could even hear each others arms shake! We didn't get a for sure answer about what is making walking hard, but the doctors in Texas agree that we need to find an answer and it is most likely not related to my Angelman Syndrome. I go back to The Children's Hospital in Denver for more tests on January 15. Keep your fingers crossed we find an answer. Mom didn't sleep the last night we were there because she thought she lost my Dynavox. I knew we would find it in the morning so I just enjoyed getting to meet the policeman and security guards and then got a great nights sleep! I was right...we found it in the morning! Maybe next time Mom will listen to me! Shout out to all my friends on the GCRC!

Crawling Is Also Getting Harder

Over the past week crawling is getting harder also. We are going to The Children's Hospital in Denver soon to see my neurologist. Hopefully with the information from Texas and her seeing me, we'll have a revised game plan for figuring out what is going on.

If You're Happy and You Know It...

I love my Elmo Sesame Street DVD. You can sing along to one of my favorite songs..."If You're Happy and You Know It!" Doing the actions is the most fun...here's how it goes so once the video starts you can play along! If you're sad and you know it wipe your eyes!" Then comes the best one..."If you're angry and you know it stomp your feet!" I'm not to fond of the next one cause it means going to sleep..."If you're tired and you know it go to sleep" And the big finish is..."If you're happy and you know it shout horray!" Did you get it all? If not...Mom and Dad are pushovers for playing it again and again so you'll get another chance! Happy practicing!

Texas Here I Come!

Mom and I will be leaving for Texas Children's Hospital in Houston Sunday. We are so grateful to Angel Flight for providing the airplane ride for Mom and I. Not having to pay for our airline tickets is huge blessing. I will miss Grandpa and Grandma Parke though. Last year they made the long drive to Houston with us. Can't believe it has already been a year since we were there to start the clinical trial. Right now I have a cold I'm trying to beat so I'll be in top form for my developmental testing. I'm so lucky there are doctors and other people who are dedicated to helping make life better for people with Angelman Syndrome. While we are in Houston, we are also planning on seeing some of the other TCH doctors so we can hopefully figure out what is making it hard for me to walk. I feel sorry for those doctors...Mom has been working overtime gathering data about ideas for possible causes and making up lists of questions. I'll keep you posted on how things go in Texas. Until then, please say a prayer that my cold goes away and we find a way to help me walk better.

Happy Belated Thanksgiving!

Mom and I drove 1300 miles over the Thanksgiving weekend but it was all worth it! I got to see almost all of my cousins, aunts, uncles and Grandma and Grandpa Parke. We did all kinds of fun things at Grandma and Grandpa's...made some hot chocolate and candy, watched the Parade of Lights, played alot and helped Grandpa make shelves for his new garage. On the long drive I discovered DVDs! I couldn't believe it...the people on the DVDs knew alot of the songs I sing with my friends at preschoool! I told Mom she needed to keep her eyes on the road but she was having to much fun watching me do all of the actions to the songs. You can check out more of my Thanksgiving pictures by clicking on "My Pictures and Videos." In the meantime, I need to go add DVDs to my Christmas wish list!

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!"

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!

Oh...the Joys of Being Pain Free!

I am loving my new medicine called napryson that I started about a month ago. Today I went to the park and it was the first time I was able to go up and down over and over again! Not only do I have the skills now, but I also don't have to deal with the pain. Before, I just climbed to the top and sat while the other kids ran circles around me! Today I was right in the mix! I even climbed the ladder ALL BY MYSELF! I had Mom take a picture just in case I needed proof! Not only have I become an expert climber, I've been running, jumping and walking EVERYWHERE! Mom and Dad are so happy...I think they could sit and watch me enjoy walking all day long. We've also been playing hide and seek. So far Mom has the best hiding spots! Today I also walked alot without my walker. It was a little hard at the playground because of the soft surface but I did it! I did run into a mean little kid at the park. Mom talked to him and the grown-up with him so hopefully he will not be so mean to the next kid he runs into. But I didn't let it dampen my great day at the park! I just smiled and kept on moving! You can check out more pictures and videos from the park by going to my link called "My Pictures and Videos."

Thanks for Being a Part of My Joyful Journey

Wow...I can't believe four years have passed already! If the past four years are any indication of what the next four years are going to be...you better hold on 'cause this is going to be a fun journey! Keep checking back to see what I've been up to!

Through my blog, I hope to share my adventures and accomplishments with my family and friends. I also hope to share little hints I've learned along the way that have made my journey with Angelman Syndrome just a little bit easier.