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Hydranencephaly Resources in caring for a Child with Hydranencephaly Physical Care of a Child with Hydranencephaly Difficult Times
Pt. 1: Taking Care of You Book: Caring for Your Child With Hydranencephaly
Printed Materials |
Mommy wrote this story about me to help the children at school understand some of the things that are different about me. She has written a new story every year. This one was written when I started grade 5, in September 1999
My name is Kayda
I was born on December 2, 1988. This picture was taken at my 10th Birthday party. I had a Cinderella cake.
I live in Whonnock. This is a picture of the front of my house.
I have a dog named Pepe. He looks after me by staying near me wherever I am in the house.
(just after Mommy wrote this story, Pepe died. Now I have a puppy named Blau who always gets into trouble.)
My favorite things to do are watch videos, Star Trek, listen to stories on tape and……
Play my little piano
In most ways I am a happy girl just like all other girls.
In some ways, though, I am different……
Before I was born my brain grew differently. I have something called Cerebral Palsy. This means that my brain doesn’t tell my body what to do.
For that reason, I move, talk and see and eat differently from most children.
It is hard for me to move my arms and legs. Because of this they get very stiff. To make sure they don’t get too stiff I wear special splints on my legs and hands at night.
I use this stander to help me stand up so that my legs will grow stronger and not be too stiff. I like my stander.
I wear this hard plastic shell to help keep my back straight. The yellow dot on my face is a Band-Aid. I had scratched my face. I am allergic to regular Band-Aids so this is a special one.
I use a wheelchair to get around.
I come to school on a special bus. It has an elevator (lift) that lifts me and my whole chair up. Then my wheelchair is strapped down so that it doesn’t move around. My van at home has a lift too.
Instead of using words to talk, I make sounds. Sometimes I am noisy and open my mouth very wide. That is just how I talk. I’m telling my Dad something.
I am learning to “say” things using my Big Macks (no not hamburgers). This picture was taken at Halloween. My Big Mack said “trick or treat”.
I have trouble swallowing
and choke easily so I am given food through a tube that goes into my stomach
called a gastrostomy. It doesn’t hurt. I’ve had it since I was a baby.
Formula (like for a baby, only specially made for big people like me) is put through the tube with a pump. If you listen really careful you might be able to hear the pump when I’m being fed.
The pump goes inside of a blue bag that hangs on the back of my wheelchair.
My eyes don’t work well but I am learning to see. I see to the side of me best. Because I may not see you coming please start talking to me before you touch me so that I don’t get scared. I “see” with my hands. I like to be touching something all the time. That’s why I have things on my tray. I especially like to take things off that are stuck on to my tray.
This bear is called Spinoza. He plays story tapes for me to listen to. I got him the Institute for the blind and the Grizzlies (Basketball Team). They send me special books called “talking books” every week. I love listening to them.
I’ve had a lot of colds and pneumonia. Because of this my lungs don’t work as well as yours. The clear plastic tube you see in my nose gives me extra oxygen. I don’t always need it. It doesn’t hurt either.
The tubing is attached to a tank of oxygen, which hangs on the back of my wheelchair. Mom fills it up every morning from a big tank that is in my room.
Mrs. Allen helps me at school. I love coming to school and being around all my friends.
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August 16, 2001- January 12, 2005 This website is funded in loving memory of Jason S. by his mother Kammy The information on this site is provided by families, caregivers, and professionals who are or have been caring for a child with Hydranencephaly. Please report any broken links or missing photos to angelbearmom@shaw.ca
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