Letter to the Teacher 2010

I send a letter with KayTar on the first day every year outlining all of her...ummm...uniqueness. I normally post it here when school starts, but for whatever reason I didn't get around to it this year. So here it is, better late than never. I can't explain how victorious it felt to put those nasty episodes at the END this year and be able to say she "used to have neurological episodes"!

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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.

I can read almost anything that follows the rules of phonics. I even read big words out of my mom's college textbooks! I learn very well from written word, especially because I don't always hear verbal words or instructions as well. When I watch TV at home, I like the captions to be on, so I can follow what is happening. I think it would help me a lot if my reading skills were used in class to help me keep up with what is happening in our room!

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I can't hear with my left ear. I used to wear a hearing aid, but my hearing got worse and it stopped helping. Because I don't hear as well without it, make sure you speak clearly to me. If you are helping me do something, stay on my right side. It is hard for me to filter out background noises and I might have a harder time focusing, especially if the room is noisy.

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I wear glasses to help me see clearly. I am nearsighted, so my glasses help me to see things that are farther away. I like to be very close to what I am looking at usually, because my eyes work best when I am up close.

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I am a little slower than my friends and I get tired easily if we are walking long distances so I might need extra help. Sometimes I fall down, because I'm not always steady on my feet, especially when I am distracted. I often have a difficult time keeping up with the class when we have a fire drill and I might need 1 on 1 help from a grown-up when that happens.

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Some days I am very light sensitive and can't bear to be out in the sunlight. I have magic lenses in my glasses to help, but some days they don't help enough. If my friends are going outside and the sunlight is bothering me a lot, I might need to go sit in the nurse's office or with another class while my friends play outside. Other days it doesn't bother me as much and I enjoy playing outside with my friends very much!

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

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I don't like to eat much, so at lunch or snack time I might choose not to eat. My mom will send something that I like every day, just in case. The textures of some foods might make me gag, either by sight or touch. 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. I need to go see the nurse at lunchtime every day so that she can put my special feeding backpack on me, so I get all the special things I need to be strong and healthy, even though I don't like to eat or drink them! The nurse will also check my glucose to be sure that my body has exactly what it needs every day!

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My lips and tongue have gotten VERY big a few times and my doctors aren't sure why this happens, if you notice my lips swelling, or if I say, "My tongue hurts." it means I'm having an allergic reaction. Take me to see the nurse immediately. I need to have 1.5 teaspoons of Benadryl per my g-button. If I have trouble breathing or stop breathing, I need to be given my EpiPen Jr. Call my mom immediately if I have signs of an allergic reaction.

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My colon doesn't work quite right and I have to take medicine to help it out, because of this, sometimes I have potty accidents. Some days I might wear a pull-up to school and some days I'll wear underwear. My mom will keep an extra pull-up in my bag just in case. At bathroom breaks, it might help if you reminded me to try to use the bathroom even when I say I don't need to.

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I used to have neurological episodes that made me feel very sick, if I have one of these at school I need to go to the nurse to be given 1 tsp of Zofran through my g-button 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 might say, "I feel spinny." or "Everything is shaking." or "My eyes 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, roll, or twitch. Sometimes they get stuck over to the side, and sometimes I can't open them at all.

* 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 18 hours.

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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

Our first annual Christmas letter

Dear Family and Friends,

2009 has been a very busy year for our household! Josh and I are both full time college students, he is pursuing a degree in criminal justice and I am completing my premed requirements and working on my bachelor's degree. Josh is still working in the IT department at the bank and is also BubTar’s cub scout leader. In my spare time I'm volunteering at the children's hospital and at the kids' school. When I can squeeze it in, I also do some advocacy work for children's healthcare reform. I have had the privilege of traveling to New York City, Washington DC, and our state Capitol to share our story, and we have been featured in a magazine, newspapers, and on local television. Between work, school, and the kids, we are on the go all the time it seems!

BubTar switched schools this year for second grade and although he misses his best friend quite a bit, he is doing very well at his new school! He has made straight A's all year and is being recommended for the Gifted and Talented program. He is also involved in Cub Scouts and sold over $1100 worth of popcorn this year, a goal he set for himself, more than twice as much as anyone else in his pack. He's already planning for something bigger next year! He loves to learn about science and he almost always has his nose in a book. We would go to the bookstore every day if it were up to him! He is reading at fifth grade level and is known to consume entire novels in a single sitting. He has big plans to be a writer/engineer/magician/ventriloquist when he grows up.

KayTar has had the most wonderful year! Last November she had a feeding tube placed and had her tonsils and adenoids removed, and since then we have been amazed at the improvements in her growth, development, and overall health! Last school year she had missed over 50% of her days in the first semester and this year, I can count her absences on my fingers. She has only been hospitalized once this year and her neurological episodes seem to have tapered off now that her nutrition has improved so much. She has gained 6.5 pounds and grown 4.5 inches this year. She attends school half-days in the Preschool Program for Children with Disabilities, in a classroom with both normally developing children and high-functioning, developmentally delayed children and is doing wonderfully. We just had an ARD meeting to create new goals for her because she has already achieved all of her goals for the year! Her teachers are confident that she will be mainstreamed for Kindergarten next year. She, too, is a big reader and can read nearly anything we put in front of her. She is an aspiring actress, singer, and comedienne and can be found acting, singing, and cracking jokes any day of the week. She has a magnetic personality and makes an impression everywhere we go.


We have had a very blessed year and we hope the same is true for all of you!

Merry Christmas,
The 'Tars