Splendid Mayhem: Increase In Seizures

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.

Monday, November 17, 2008

Increase In Seizures

We are waiting for lab results- if they are 'clear' then we will 'up' Logen's seizure med once again.

Logen had about 10-11 seizures from after school to bedtime Friday. We administered his Klonopin.
Saturday: around 5 seizures noted (hard to say since he doesn't sit right in front of us the entire time he's awake)
Sunday: 3 WEIRD seizures. A NEW form... we've not had before. He was sitting at the table and it was like he lost control of his neck. His head flopped back until we caught it and his body jerked slightly. His eyes were glazed over- he did not blink when we waved our hands in his faces. And, he giggled every time he came out of it. Strange!
Monday: 1 at school, several at home- 'weird' ones

Will update on this when I hear back from St Louis. I was impressed that the Neuro called to check on Logen Friday (I just listened to my voice mails this morning...)
I have a test I need to study for....