Christina's story: Knocking on the Door

Friday, August 24, 2007

Knocking on the Door

The Door was open, so we went in. We’ve been busy the past week roaming around Door Co. Wisconsin, strolling by the waterfront in Fish Creek, eating at an Old Post Office in Ephraim, checking out the caves above the town, checking in on the sister goats in Sister Bay, and of course, cruising up to our fav restaurant in Gills Rock, the Shoreline, for a beautiful sunset dinner. The sunset didn’t cooperate this year (total cloud cover) but the meal was as delicious as ever.

Here’s a few links to places we’ve been or like while there. For the complete experience, drive up to Door Co. and check it out yourself! (Highly recommended)
High Point Inn
Shoreline Restaurant
The Cookery
Summer Kitchen
Chocolate Chicken
Made in Britian
Hands on Arts

And some video highlights of our trip:

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My story

Hello, my name is Christina. I am a five-year-old little girl who suffers from epilepsy. When I was a few months old, I began having strange tonic extensions that eventually were diagnosed as seizures. I would have them several times a day.

Eventually, they developed into spasms, clusters of seizures that made me jerk and cry like someone had passed an electric current through my body. Those were no fun at all. They were hard for mom and dad to watch. I started taking all kinds of medicines, as my mom and dad and their doctors tried to get my seizures under control.

When I was only a few months old, it also became apparent I suffered from some kind of genetic disorder. I was developmentally delayed. They began all kinds of tests, and initially they thought I had mitochondrial disease. My dad wasn't sure I would live to be two years old. (read his poem to me.) That was very hard. I didn't learn to crawl, didn't learn to sit, didn't learn to walk.

But after more tests, they eventually decided I probably didn't have that disease. They still don't know what is wrong with my genetic makeup. Maybe they never will. When I was 18 months old and my spasms had become pretty bad, my mom and dad began me on a three month steroid treatment, ACTH. Dad had to give me shots in the thigh every night and I had to drop out of day care for awhile. But I was a brave little trooper and hardly cried at all. The treatment worked, and I was seizure free for awhile.

Slowly, the seizures came back, though not as bad as before. My mom and dad and doctors did their best to take care of me. They treated me like the special little gift from God I am. They adjusted my medicines, tried new medicines, made lots of doctor visits, and kept trying to nourish my small little body on puried food as I've never learned to chew whole food. This is what my seizures looked like then.

When I turned four, my mom and dad began me on this new diet, the Ketogenic diet. It was kinda gross at first, lots of mayonaise and butter and stuff. But dad liked it because everything was calculated out by a real dietician and he could finally rest assured I was getting what I needed. I responded well to the diet. I started gaining weight. And after a few months, began another long seizure-free spell.

A few months ago, my seizures began creeping back. They still are not as bad as those early infantile spasms, but they have been getting stronger. My mom and dad and doctors are doing what they can to adjust the diet, consider medicine ratios, and all that.

I also get lots of good therapy. Beginning when I was very little, I had many friends come and visit me through Early Intervention, trying to teach me to prop, use my hands and arms, side sit, put weight on my feet, use my vision, and all sorts of fun stuff. When I turned three, I began going to the Special Education District of Lake County. There I met other special little angels like me. I have wonderful teachers! They are so sweet and patient.

This is my place to share my special story, and triumph in my little accomplishments. Like learning to sit, my new trick! Since I can't talk let alone write, my dad is helping me out as my ghost writer. (He's a swell dad, or dadooooo as I often call him. He doesn't think I'm saying actual words, but I do sometimes)

Anyway, I hope you enjoy these modest posts. Maybe the stories here can be a blessing and help other families. At the very least, they can be a reminder that we need to thank God for the little things in life, and the mercies he gives us each day.

Christina's story

Friday, August 24, 2007

Knocking on the Door

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