Splendid Mayhem: EEG Results...

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, June 30, 2008

EEG Results...

Suck. Logen IS having seizures. We have suspected it for a while- he's not having the full blown entire body jerking kind (except for the one nearly 2 weeks ago).
Here are a few things we've noted in the past that point to seizure activity that I have somewhat ignored thinking it would all go away. Bad Mom, I know...
* Progress in therapy for a few months, then nothing for a month
* Night waking- blood curdling screaming, I've taken him to the dr for this numerous times, and everytime he checks out healthy.
* Blank stares, can't concentrate or focus for brief periods (1-3 minutes) Doesn't respond to his name, etc. This is the biggest sign of seizure activity!

So, I haven't decided if this is a blessing or not. I mean- if the neuro decides to do meds (and I'm pretty sure she will) we could see MAJOR changes in Logen, right? The St Louis Neuro is out of the office today and tomorrow. So, at the earliest I will hear back from their office on Wednesday. I faxed them the results on Friday. I dislike the waiting game very, very much.

Please says prayers for my sweet Logen. For now, we just wait. There is nothing we can do, but pray. The nurse from the CP Center said that if he has a seizure and it lasts 5 minutes or longer to go to the ER, otherwise- just keep him safe while he seizes.

6 comments:

AnonymousJune 30, 2008 at 11:01 AM
Ah, Jess.....prayers going out to all of you!! I'll be thinking of you guys.
BTW, I'm going to respond to your E-Mail today...I've been soooo busy :)
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DawnJune 30, 2008 at 2:35 PM
Awe Jess, I'm sorry you didn't get better news. But maybe now that you know, he can be treated and won't have any seizure. I wish it was better, he'll been in my prayers today as he is always.
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SheilaJune 30, 2008 at 9:37 PM
Oh, Jess! I'll keep all of you in my prayers and will be following along for updates.
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KieraJune 30, 2008 at 10:25 PM
Jess - That stinks. I will continue to think of you and pray for you, Logan and the family. Keep us posted and text if you need to.
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Popcorn HouseJuly 1, 2008 at 7:39 AM
OH hun, I am so sorry you guys are going through this. Joseph had a feiberal(sp) seizure once and I LOST it, so I know I would be a wreck.

I have done quite a bit of research on seizures, and the meds are 85% affective. I think at first they are VERY tired on them, but then I think you would see an improvement. Seizures are so hard on their little bodies that is probably why he isn't progressing in therapy lately. Keep us posted, I will be thinking and praying for you!
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BarbaraJuly 1, 2008 at 8:00 PM
I'm sorry that your news wasn't better. I hope that they are quick to get any meds figured out. I'll be thinking of you guys and keeping my fingers crossed that he doesn't have another one.
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