A Little Bit About Me
My name is Astrid, and I am 8 years old. I live in Michigan with my parents, my two little sisters, and my 2 cats. I was diagnosed with Aicardi Syndrome when I was 3 months old.
I really like to use my hands to play with things. My hands don’t always do exactly what I want them to do, but I have taught them a lot with some help from my favorite OT. My favorite thing to do is bang noisy things on my tray, or shake noisy things. Even though I do not speak, I am sometimes the noisiest person in the house! My favorite quiet toy is a slinky that looks like a tiger, but watch out! When I start whipping my tiger around, I have a long range and somebody could get hurt!
I am learning how to communicate using pictures. Right now, if somebody shows me pictures of two of my toys, I will touch the one I want to play with. My parents are so mean that they usually show me pictures of a really good toy and a really crummy one, like this icky old plastic spider, so I have to be good at this if I do not want to get stuck with that spider! I wish they would only show me pictures of good toys so I would not have to think so much.
I can sit for quite a while in my “back jack” chair on the floor, and I like that because I can keep an eye on my sisters. I really love my Standing Dani stander. It has huge wheels so somebody can pull me around, and I can stand up and see everything. It also has a tray that makes great noises when you bang it with toys! I stand in my stander at home for about 2 hours at a time.
My absolute favorite thing in the whole world is crinkly paper — the whole school saves the ends of plastic that come out of the laminating machine for me. Pharmacy bags crinkle great too, and I have some sparkly wrapping paper that I like. All paper within my reach is fair game. I stole someone’s sales flyer in the grocery store one time when my mother wasn’t looking! That was a good piece of crinkly paper.
I am a Junior Girl Scout this year, and this is my fifth year with this troop. I have a lot of fun with my Girl Scout friends, and am always happy to go to meetings or activities. Some of the girls like to push my wheelchair or pull my stander, and I really like that a lot. Sometimes when we line up for pictures I pull the beautiful long hair of the girl next to me, but so far the girls have been very understanding, and the leaders are learning to put girls with short hair or pony tails next to me in the pictures.
My Current Medical Condition/Seizures/Meds
My biggest health problem has been reflux, which has also caused me to have trouble breathing at night. I have had two Nissen fundoplications, both of which failed within about 6 months. In early spring of 2002, I had a new procedure called an esophagogastric dissociation in order to solve my reflux. This involved detaching my esophagus from my stomach, and attaching my esophagus directly to my jejunum. My stomach is also still connected, and I am fed entirely by g-tube. Because I have had some trouble swallowing, I’ve been eating by tube since I was about a year old, so this was not a big change for me. This new surgery is working very well, and has permanently solved my reflux. I am breathing much better at night now, though I still always sleep on a pulse oximeter just to be sure. I also outgrew some of my swallowing problems, and so now I can eat a tiny bit of food for fun.
I also have an obstructive sleep apnea, and I sleep with a BiPAP machine to keep my airway open. My daytime naps are shorter since starting BiPAP, and I have more energy. I also have the “Vest” for chest percussion, which keeps my lungs nice and clear so I can stay healthy and out of the hospital in the winter. I like to hold my jingle bells when I use the Vest so that they make a lot of noise.
I’ve been on the ketogenic diet for 6 months, which helps a lot with my seizures. I still take Lamictal too.
I have a brightly colored pair of KAFOs for stretching, and a TLSO for my scoliosis and kyphosis. I get around in a Solara Jr. Wheelchair and Convaid Cruiser (for short trips), as well as my Standing Dani for special outings. My mother uses a Trixie lift for transfers, and I have a special van that lifts my wheelchair.
Mostly, I like to spend my days being happy, and I do a pretty good job of it. Luckily, I am surrounded by people who seem to have the same goal most of the time. I can always count on my sisters for a snuggle!