Christina's story: September 2007

Monday, September 24, 2007

My seizures

These are what my seizures looked like before I began the Ketogenic Diet (edited, the whole seizure was over 5 minutes long). I would have about four or five of these a day. Notice my tonic extensions, and my nystagmus (involuntary eye movements.)

Saturday, September 15, 2007

Vote early, vote often

I've been busy on other blogs lately, mainly my work one Lake Affect. But I didn't want to neglect you faithful readers to our family blog site. Molly and I go to the Bears game tommorrow. A generous work contact of mine is taking us. Yipee!! The Bears actually ought to win this one, against the lowly KC Chiefs. I was going to bring a sign, but then my contact broke the news to me that his seats weren't all that good. Anyway, in the interest of fun, I will let you guys vote on which sign I should have brought. See the poll to the left and Go Bears!!!

Wednesday, September 5, 2007

Blog envy

What would Freud say about that?

I didn't start this blog to be rich or famous. But I have to admit, I suffered from just a triffle bit of Blog Envy when I read the account of Dawn Meehan in the Chicago Tribune, the mother of six with no formal writing training who has stumbled into the media spotlight for her witty blog chronicling the escapades of her children and her everyday brush with insanity. (No, I am NOT going to link to her site.) She is being swarmed by literary agents, media, radio stations, even Good Morning America, who have branded her the darling of the blogosphere comparing her to "the legendary humorist Erma Bombeck."

I never read much Bombeck, but I've read plenty of humorous writers. There's a lady in North Carolina, Laura Snyder, who writes a column Laura on Life that is run in 40 small papers in 22 states. She e-mails me (and a bunch of other editors) her column every week. She has the same self-deprecating style of humor. I haven't seen her on Good Morning America. And I used to run a column from a school board member in Lincolnshire on mothering, called momologue. Her dream was to be the next Erma Bombeck. Her stuff was good, not great, but plenty witty. So why Meehan?

As I read the words of King Solomon in Ecclesiastes this morning, a partial answer came to me (besides pack journalism):
"The race is not to the swift
or the battle to the strong.
nor does food come to the wise
or wealth to the brilliant
or favor to the learned;
but time and chance happen to them all."

I have nothing against Meehan. I wish her success. Solomon goes on to say "to accept his lot and be happy in his work - this is a gift of God." And I can say I am generally happy with my work. Still, if time and chance were to wink in my direction ...

OK, I will give you the link to her site now (like you don't already know it) www.mom2my6pack.blogspot.com

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