Splendid Mayhem: More Seizure Activity

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Friday, February 13, 2009

More Seizure Activity

My little Logen! He had another at school this morning. Followed by buckets of drool, tongue clicking, and a pale face (taking about 30 minutes to regain color).

I have heard back from St Louis (I also put in a call to our state hospital's Neuro) The nurse said it sounded like time to increase meds. I told her my concerns about that. I do NOT like the Keppra and I am not happy with increasing that medication. 1) He doesn't eat to well on it. Although his appetite has come back for the most part- he's still not gaining any weight and hasn't in a year
2) Behavior! It makes him crazy! I don't like the way it affects his behavior/attitude

She was going to talk to the Neuro and call me back shortly.
I want seizures under control for good!

3 comments:

ErinFebruary 14, 2009 at 2:21 PM
I am sorry sweetie, please know I am still praying for you and your family. Please keep us posted. I hope you heard back from the neuro. We go for Sean's follow up on Monday. What type of seizures is Logen having? Sean has complex partial seizures and I know different medications help different types of seizures but just thought I could try to help:) Hugs
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AnonymousFebruary 14, 2009 at 2:28 PM
Hi, Jessica,
I read quite few parent blogs - and many report their frustration with seizure management. I am not recommending other parents replace your physician, but the other parents can share a lot of what they have been through.

Here is a post I thought was helpful, and which I will be linking into one of my future posts.

http://mamamara.blogspot.com/2009/02/when-autism-gets-medicated.html

My only warning is that mamamara is often very graphic - if you are do not enjoy crude humor, you might just want to read this one post.
Barbara
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Andrea "The H family"February 17, 2009 at 10:51 PM
I lost you for awhile girl. I now have your updated blog address. Logen?! Man..I can't believe this honey. Ok..let's talk. I'm sure you're all over this. Food diet? My friend has tried that Kenetics diet? heard of this? stopped her daughters seizures. Have you gotten on P2P? I haven't been on there? I'll pray like the house is on fire honey.
Huge hugs,
A
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