Christina's story: January 2008

Thursday, January 17, 2008

My funny hat

Mommy and daddy took me down to Children's Memorial Hospital in the city Monday for an EEG. A guy comes in and sticks a lot of sticky stuff in my hair and attaches these little multi-colored wires to my head, and then wraps it all up in my very own turban. Don't I look ever so chic?

It gives the medical people a picture of how my brain waves are working. Mommy says they were still looking pretty different. But then, we all know I am different in my own special way. They wanted to get a picture of my brainwaves awake and asleep, and during a seizure. So I took a little snooze.

But I didn't have a seizure. Just as well, mommy says. We were able to show my epilepsy doctor a recent seizure my dad caught on film.

Mommy also brought my little doggy for me to lean on! All and all, it was an OK visit. We will know more from the EEG later. Mommy, daddy and the dietician also discussed some exciting new additions to my diet coming soon, like Tuna, winter squash, and maybe fruits like Papaya and Mango.

Wednesday, January 9, 2008

Good grades

I got my Progess Report Tuesday from my Special Education teachers. I made initial benchmarks toward several of my goals!

Among my accomplishments: I activated a cause and effect device given parial physical assistance and two verbal prompts 80 percent of the time; I held both hands on a tactile material for 10 seconds 40 percent of the time; I reached for an item suspended in front of me twice within an activity given partial assistance and verbal cues 57 percent of the time; and I watched for three seconds three times during a 20-30 second activity 67 percent of the time.

Baby steps, as they say. My mom and dad are proud. Now it's on to the second benchmarks.

Saturday, January 5, 2008

My bowling party

Dani and Chris helped me celebrate my birthday belatedly today with a bowling party. Gabe couldn't make it, but his mom and big brother Kyle came. We all had lots of fun, using their special ramps to roll the ball down the lane. I got a 112, thanks to my helpers, mom and dad! Dani really enjoyed herself, and smiled up a ton. Thanks Dani and Chris for making my birthday party fun.

Chris, Dani and I prepare to bowl.

Dani looks at the score with fascination while I take a little nap.
Even the big brothers had lots of fun. (Gabe's brother Kyle and my brother Peter)

Friday, January 4, 2008

Watch me sit

Look at me sitting, so big and strong. For almost a minute and a half!!! (for you clock watchers, I was in position about 15 second before daddy scrambled to get the camera on me. I'm tricky that way.)

Wednesday, January 2, 2008

My favorite things

I have a new favorite past time. I love to practice my sitting. I surprised mom and dad a few days ago by starting to sit up again, like I first did four months ago. see Aug. 29 post. But now I do it with fervor. Ten, fifteen, even twenty times an hour.

I'm kind of sneaky tho. Every time daddy gets the camera out, I take a break. But maybe in a little bit I'll show off for the world. I need to work up to it. I'm a little bashful. After all, I'm only five.

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