I am a very happy 3 1/2 year old girl! I live at home with my mom,dad, and I have the best older sister Elizabeth who is 5 1/2 years old. I have a lot of support as my family is all close and they don’t live to far away. Even though I have a lot of special needs everyone treats me the same as if I didn’t.
When I was in my mommy’s belly the doctors knew something was different with me with an ultrasound. My ventricles were enlarged and I had a genesis of the corpus callosum. My birth went fine until I was 4 1/2 months old and I had my first spasm seizure. I have been in the hospital many times for seizures,pneumonia,a shunt placement at six months old,and a g tube placement in January 2010. F g In the beginning I seemed like any baby but at 4 months old I was playing with my toys and my mom and dad noticed I was quiet and staring off to my left side very strongly. I stayed there for a little bit and then blinked and went back to playing. This happened a couple of times and then I saw my neurologist and my mom happened to tape me and he said it was a seizure. For the longest time they weren’t even sure if it was counted as epilepsy but it kept happening as spasms. I would get stiff,stare off,and my eyes would kind of twitch really fast and my arm would go out. Sometimes I make noises and sometimes I smile. So I stayed at the hospital to have an EEG and I have had enough of those now even a 24 hour one. I don’t really like getting the part where they rub the color on your head. So I do take four meds daily now but I have tried a bunch in the past to get where I am. It wasn’t until recently September 9,2010 that they finally diagnosed me with aicardi syndrome. It took so long because I do have a genesis of the corpus callosum and seizures about 4 months old but the lacunae(white spots)on my eyes didn’t fallow the same patterns as other girls. They did different tests and they all came out negative so they said this was the most likely thing I have. It was nice to finally know and have a name for it.
I have come a long way since the beginning. I started different therapies at 8 months. I have physical therapy,oral therapy,occupational therapy,nutritionist, speech therapy, and a eye teacher from VABVI. I also have a bunch of specialty doctors and they all say I am doing great!
I am a very strong,stubborn,and loving girl. My mom says that’s good because it has gotten me where I am today and to keep going. She helps me a lot by staying home with me and doing therapy when my therapist aren’t there. I do have a lot to overcome and I overcome a lot.
I have seizures,hypotonia (weak muscles), I aspirate,a genesis of the corpus callosum,CVI,and developmental delays. I’m also not potty trained. I take medications for my seizures. Keppra, two different doses of clonazapam,depakote,zonisamide,diastat.
I usually have spasm seizures everyday but sometimes not and they have gotten a lot better. The less seizures the more I can learn. I can’t get up or walk but I do move a lot with rolling on my left side or moving my legs and arms all around. When I am on my stomach I can lift my head and look around. I have a benik vest to help support me when I sit up and some afo shoes (braces) to help me stand up. I can also recently hold my head up pretty good when my picks me up and is standing holding me. Before I couldn’t control my head at all but now if it goes down I control it slowly and turn it side to side. I love being up and seeing so much more! I am so proud of myself when I have done something big in therapy as is everyone who loves me. Like when I sit by myself for a few seconds. I have special equipment to help me with every day things. I can’t talk but I can say mom and a bunch of different sounds. Everyone seems to know what I always need.
I eat puree foods and I love applesauce. My mom even gives me chocolate like junior mints yum! I also have pediasure through my g tube and that has taken a lot of stress off of me with not having to swallow a lot of food as sometimes it could go in my lungs. The tube is also for me to do the ketogenic diet which is a fatty diet to help slow or stop seizures. I cant take the chance of the fat going in my lungs. Hopefully after that I can stop using my g tube and go back to full time eating orally. I can’t hold my head up but actually now if I lean a little bit forward I can and I have control moving it up, down, and side to side. I am so much stronger now and my therapist are working on a head support just for me. I have my own special stroller,chair,bath seat,swing,lots of special toys, and hopefully a bed soon. Sometime a carseat when it’s safe for me to face forward and I weigh more. I am tall for my age but I don’t weigh a lot because I don’t have much muscle tone. I am 39 inches now and 31 pounds. I have a great sense of humor and I smile occasionally. I let myself be known. I am a fun loving girl and I have a lot of love to give. I am a content little girl and I like to get to know people. I am shy at first but then I will open up and show people the real me. If I am happy I will sound happy and have a happy look on my face. My happiest is being all spread out on the floor being able to wiggle freely. If I am mad watch out because I’m a screamer and there will be no question whether I’m happy or not. I get excited by moving my legs and arms a lot and sometimes making happy sounds. I work really hard at my therapy but when I have had enough I make a face and will make an unhappy sound. I try to get my own way when I don’t want to do something and most the time it works. My mom and grammy say I remind them a lot of my great-grammy. Some of my favorite things to do are going for a walk in my stroller or my special seat that fits in our wagon. I like girly things and purple! Also sometimes green and anything sparkly and shiny. I love cuddling with my mom and grammy. I don’t even have to be tired to fall a sleep. I also take a nap a lot with. my daddy or we just hang out and pick on each other. My sister and I are really close. She is always asking for me to play with her in her room. We watch tv,read books,play house. She is so good to me and I love her. She would do anything for me and she does a lot for me letting mom and dad know when I am having a seizure or need something. I couldn’t ask for a better sister. I don’t see her as much because she is in kindergarten now but we both love it when she comes home. I get one on one time with everyone and also time with all of us together. I am lucky to have my grammy next door who I have special cuddle time with and she gives me yummy candy too! I love it when just the four of us in my family hang out and do nothing. We also do a lot of different family trips.
Some things I don’t like is being fussed with. I don’t like my hair brushed,it feels weird when my mom brushes my teeth,I don’t like being confined.
I also have a really great respite person who takes care of me sometimes. She is a really great person and as is the whole family. They are family to us. I love going to her house. She takes great care of me even with all my special needs. I go to church on Sundays with her and there is a group of girls around my age that surround me when I go. I love how my respite family and my regular family take care of my special needs but they don’t treat me like I have special needs. I am treated just like everyone else which I love. We do things like everyone else just in different ways so that I can be included.
Everyone in my life is great. I have great therapists who have helped me so much,I love my respite family,my whole family is wonderful including my cousin who is one and gives me lots of kisses! I am one lucky little girl! I have more challenges in my life than most kids my age but I also have a very
special life that is unique.
So right now I would say my seizures are doing pretty good,and we will start the diet in November and we have to go to Boston for that. I can’t wait to see what I am capable of but the doctors have always said its a wait and see and it will be a long and slow process but definitely I will always progress and won’t look back! There isn’t anything I can’t do with all the love from my family. It takes me a little longer to do things but once I figure it out I do great! I am just learning right now about being a kid and to have fun!