On her first day of school

Hi! My name is KayTar. I'm so glad to be in your class this year! My mom helped me write this letter to tell you a little bit about me that might help our year go more smoothly.

Sometimes I have neurological episodes that make me feel very sick, when that happens I need to be given .2ml of Zofran gel on the inside of my wrist and I'll need you to call my mommy right away. Usually I need to lay down some place dark and quiet when I start to feel sick, too.

These things might help you know that I am starting to feel sick:

* I suddenly look very tired. I might lay my head on the table or close my eyes. If I'm standing up, I might hold on to something for balance and close my eyes.

* I might stop responding to you. Sometimes I get very quiet and sometimes I make noises like I am in pain. It might seem like I am slipping in and out of a deep sleep, too.

* I won't want to stand up or walk. I probably won't move at all, because it makes me feel worse.

* Sometimes my eyes do funny things. You might see them wiggle or roll. Sometimes they get stuck over to the side, and sometimes I can't open them at all.

* I might say, "I feel spinny." or "Everything is shaking." or "My eyes feel sick."

* When I get sick, sometimes it hurts my tummy and I start to vomit.

* I might be in a lot of pain and the lights might really hurt my eyes.

It is important to remember that all of these things don't happen every time I get sick, but if you notice even one of these signs, please call my mom so she can come and get me. My doctors aren't really sure how to stop these episodes, so I have to go home and rest in my bed until it is over. Sometimes they can last a very long time, up to 11 hours.

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I also have asthma and if you notice me coughing a lot or coughing so hard it makes me gag or vomit, I need to be given 4 puffs from my Albuterol inhaler with the yellow spacer mask.

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I can't hear much with my left ear, so I wear a purple hearing aid in that ear. If you hear it squealing, usually you just need to wiggle the ear mold and push it in to help it make a tighter seal in my ear. If it keeps squealing, I'll probably pull it out of my ear, if that happens and you can't fix the squealing, it is okay to put it in the case in my backpack. Because I don't hear as well without it, make sure you speak clearly to me if you have to take it out and if you are helping me do something, stay on my right side. When my hearing aid isn't in, it is hard to me to filter out background noises and I might have a harder time focusing.

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I don't like to eat much, so at lunch time I might choose not to eat. My mom will send two jars of baby food and a snack for me every day, just in case. If I want to eat the baby food, I will need help spooning it into my mouth. I don't have any food allergies, but the textures of some foods might make me gag. I try my best not to touch these foods or get too close, so if I ball up my hands or say "No!" it means it is probably the kind of texture that will make me gag. If it gets too close to me I might push it away from me to protect myself.

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I'm so excited to be in school this year and I know I will have lots of fun in your class!

Your new student,
KayTar










My baby is at school now. When I left, she was in the pretend center, vacuuming the rug. She said, "Look! I'm vacuuming, just like Daddy! Bye Mom!" That's my girl!