Emilie

My name is Emilie Paige. I am 8 years old. I was diagnosed with Aicardi syndrome at the age of 7 mos. Mommy brought me home from the hospital 3 days after I was born. She had me via a planned c-section, full term too. I was 9 lbs. 13 oz. I was very healthy. When I got home from the hospital almost immediately I started having seizures. Mommy took me to the pediatrician and they said I just had reflux. When I was not breathing during a seizure tho my mom called 911 and I got to ride in the ambulance to the hospital. That was 1 month after I was born. After many Dr’s appointments, a lot of
rig-a-ma-roll, and 7 months later I was referred to a neurologist. He is a neurologist in Houston, TX and he knew what I had immediately. He sent me in for an MRI of my brain and it showed I have an agenisis of my corpus callosum. I take phenobarbital now for my seizures and only have about 2/month that my parent’s know about. Sometimes my mom comes in to get me ready for school and I am having one. I can sit on my own and love to turn circles on our wood floors. I eat orally and can even feed myself by hand. My teachers at school and my parents are helping me to not throw my spoon after I give myself a bite……..I think it’s funny tho. I drink out of a sippy cup that I hold all by myself. I walk in a gait trainer at school but tend to drag my left leg a lot. My VI is so proud of me because I can see where I am going and roll or scoot on my bottom to get what I want. Mommy has to keep a good eye on me when I am at home in the living room because I love getting her books and magazines off the coffee table and put them in my mouth and tear the pages. I love paper! I am going to the cardiologist tomorrow to have an ultrasound done of my heart and an x-ray of my lungs to make sure they are working properly. I cant talk but make lots of noises so people know what I want. I don’t use my left hand at all to grab things. I stay very constipated too which is quite uncomfortable. Mommy and Noni decorated my room so pretty. It is lavender with butterflies and flowers and I have my very own toy bins that I love getting into and dragging out as many as I can. I hate having my hair brushed and teeth brushed and getting dressed for that matter. If I don’t like something I will cry or fuss or bite my hand. My uncle Dub wouldn’t let me get into mommy’s papers on the coffee table today so I pinched him real hard, haha. I love to smile and am loved by everybody. I love to go to the park and swim. I get to go on our boat every summer and go swimming. I went on my first fishing trip ever, it was so much fun! I have two brothers. My brother, Elijah is 10 and my step-brother, Corey is 8…just like me. I have a wonderful family and love them very much.