10-13-11
Hello my name is Claire. My friends call me Claire Bear. I am in 2nd grade now. I have 18 kids in my class. They love to push me in my wheelchair. They make me giggle when they make funny noises.
I still love to ride horses. Heidi is still MY horse. I'll share her if I have to. Lol. Julie is my teacher and I love her!
Today I am getting my VNS put in. I'm really hoping this will help with my seizure control and that I'll be able to get rid of some of my medication. That's the plan.
Dr. Smyth just came in. He is done implanting the VNS and everything went smoothly. It is set on it's lowest setting already!! Love that dr. Mom and dad call him doogie houser! Lol
Can't wait to see everyone in St Louis this summer! How about I take all my aicardi sisters the St Louis Zoo in July! We will have so much fun!!! Meet me in St Louie!!
Hi my name is Claire. Everybody calls me Claire Bear. I have Aicardi Syndrome. I was diagnosed at about 4 months old at Children’s Hospital in St. Louis. I have myoclonic seizures, I cannot walk, I cannot talk,…but oh, Mom says I can sure melt a heart with my precious little smile.
I go to school at Franklin County R-II School. I am in the preschool there. I love my friends, Ava, Alivia, Adam, Aaron, Owen, & Seth. They just love to push me around in my kid cart and play peek-a-boo with me. My favorite part is when they make me giggle. I’m always laughing with them. I also tend to amaze my friends and teachers with what I can do. Did I tell you about my personal assistant? She is the BESTEST! Juju, Julie, takes care of me at school. She puts me in my gait trainer and I run out to my friends on the playground. She does everything with me. I love her. And my teacher Miss Maureen is really cool too! I’m learning lots. I always let them know what I want, one way or another. I’m pretty lucky, I go to school with my big sis. She’s in 4th grade. She is so cool! And my mom teaches 7th grade at my school. I hope she’s my teacher someday. Wish my dad was here too, but he’s busy on our dairy farm. He’s got a pretty important job providing St. Louis and the surrounding area with dairy products. Can you imagine life without milk, yogurt and …ICE CREAM!
I’m a busy girl with lots of therapies. I have OT, ST & PT at school. They are pushing me to walk, talk & learn. I know I can, and I know I will. I also have PT at Grandma’s on Thursday, Exceptional Equestrians on Friday mornings and aqua therapy on Friday’s at the YMCA.
Grandma & Grandpa keep me in the mornings before school and then take me to school by 12:00. I come home from school with Mom & Ellie, my big sis. Grandpa comes in from the dairy farm and has a long breakfast with me. I love playing with my Grandpa. He loves to wrestle on the floor and snuggle. Me too! Grandma always know what I want and seems to have it for me before I need it. Don’t know how we could everything done without Grandma. She is the GREATEST! We have the best family support system. We are truly blessed.
I take my share of meds. Don’t know how they keep it all organized. I’m currently on Vigabitrin (slow to arrive in the mail), lamictal, depakote and clonazepam. They are trying to wean off of one, but not going too fast.
10-13-2011
