Sunday, May 17, 2009

AS Walk-A-Thon

A huge thank you to everyone on the Peanut's Peeps team. Thank you to those who walked, those who gave and to those who had me in their thoughts. The day started a little rainy in Pueblo but by the time we were in Denver and the walk started it was another gorgeous Colorado day. I had a little extra challenge this year throughout the walk...a flat tire on my trike, but even that didn't stop me! A special shout out to Debie who hasn't missed a walk-a-thon since I was born! And another special shout out to Aunt Michelle, Uncle Mike, Max and Mason for walking in honor of me at the Omaha walk. Dad, Mom and I are so blessed to have such supportive people in our lives as we travel this journey. Words cannot say how much it means to us. And so...we are "another step closer" to a cure! Or from my perspective..."we are another flat tire rotation closer to a cure!"

Monday, May 11, 2009

Are These Seizures?

It was a year ago that I began having small seizures more frequently and so I started on regular medication. Learning to tell what is a seizure and what isn't is still kind of hard for Dad, Mom and me so Mom took these videos to help find out if it is seizures or not. The first one is more of weird eye movements I was making after going for a trike ride. Sorry for the rough look but I had a nosebleed coming home from school today, the scar on my nose is from a fall after a seizure at school a couple of weeks ago and then during the trike ride tonight I got my foot caught underneath the trike and it HURT so I was crying before this video was taken. Also, on review of the video we've decided...next time possible seizure happening I need to remove the sucker from my mouth!

The second video is when I was falling asleep on the couch with Mom. I've started to do this type of thing more often as I fall asleep. My head always kind of jerks to the left like I'm trying to look over my shoulder. Usually it is a little more of a jerking motion that goes farther to the side. In this video, it is at the beginning video that we are wondering if I had a seizure. Then if you watch really close when I have my hands over my face, you can see my left eye through my mittens and it looks like it is way up in my head. And because I know you are wondering...what's with the ladybug socks on my hands...it keeps me from pulling my hair out as I fall asleep. Don't laugh...it really works and I like them!





Saturday, May 9, 2009

Valued Strengths

That's the name of Mom's store she "opened" at Zazzle. With all of the meetings we've been having with the school district lately, it really has her thinking about all of the strengths that come with Angelman Syndrome. So...in celebration, she has created apparel that reflects many of these strengths. Check out her store at http://www.zazzle.com/EmmaKristineE
of the proceeds are going to the Angelman Syndrome Foundation.

Thursday, May 7, 2009

Make It Go Away!

My leg continues to bother me. I can go good for about 15 feet, then it starts to hurt so I stop, "shake it out" and go again. I guess it is one way to make sure I stop and smell the roses along the way...but does it have to feel like I'm always stepping in the rose bush??? Joe, my orthopedic physical therapist, measured my knee and it was bigger than the other one! I so hope the MRI on June 3rd gives us a for sure answer so I can have a pain free summer like alot of last summer was. I was hoping to play on a t-ball team this summer but with my leg hurting like this...I'm destined for the bleachers!

Saturday, May 2, 2009

I'm Getting Ready for Kindergarten!

Everyone has been very busy making sure things are ready for me to start kindergarten. All of the therapists, teachers and other people have come to watch how great I do at preschool so they will know I'm going to be a star in the kindergarten class. Mom and Dad have been going to alot of meetings. IEP is what they call it...I think it stands for Incredible Emma Planning meetings! This week I got to go to the kindergarten class. The kids were really nice...they loved my talker! Check out Oreo...he is the class hamster! Mom took lots of pictures so I can look at them over the summer and remember how fun my kindergarten class visit was. After my visit, I showed my new therapists and teachers all the things I know. The thing I did best.....I was ME! Yep...Incredible, Awesome, Amazing and Silly Me! I think I won them all over cause they kept saying..."Boy we are going to have fun next year!" When it was time to leave I really didn't want to go. Can't wait to start kindergarten!

Preschool Graduation

First Bob graduates...now it is my turn! To celebrate my preschool graduation, my classmates and I sang Take Me Out to the Ballgame. Then we all got certificates and medals. And best of all...we made ice cream sundaes with sprinkles! These are my teachers. They are alot of fun and watch me really closely.

Introducing Valerie...One of My Speech Therapists!

I have alot of people helping me to learn and grow. One of my favorites is Ms Valerie. I see her every other week. She is helping me to learn to say sounds and words and to make my mouth stronger so I can stop drooling so much. Valerie always thinks of new things to do to keep me working...she is always very silly! This week she made me into a bean bag sandwhich because I was wanting alot of sensory input lately.

Congratulations Bob!


Yeah Bob! He passed his first puppy obidience class! Two more to go before he gets his Canine Good Citizenship Award. He is doing great going to work with Mom. The patients always ask where he is at when he doesn't come.