Splendid Mayhem: Logen- No Food?!

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.

Sunday, November 30, 2008

Logen- No Food?!

I'm not sure what's going on with Logen now. I don't know if this is a side effect of the Keppra of what. He's not eaten breakfast OR lunch since he's been home for the break. His teacher says he eats at school. I'm skeptical now. What they say is eating may not be eating to me. So, I'm calling the Neuro first thing in the morning to ask. Our last appt she brought up his weight gain- and some concerns. He's been in the same size since before Parker got here!!! Jan 2006 I remember buying some pants he can still wear. We increased the does to 2x/day on Thanksgiving- and we've seen no seizure activity since! (YAY Logen!) We shall see on the eating. Say a prayer for the little guy. And his Momma. I've been having some nasty chest pain the last few days. :(

Logen is now up to 6 medications a day. He's 5!!!!! This is insane!

4 comments:

ErinDecember 1, 2008 at 8:47 AM
Wow what a great story. That is great that he has been seizure free. It is hard to find the right dose. My son is on Trileptal for complex partial seizures. It is scary thing. I hope the neuro can help and get your little boy to eat.

(I am a friend of Amanda and Leah)

My son suffered an in-utero stroke, has rh cp, seizures and more. We got to lots of therapies I hope you don't mind me stopping by feel free to stop by mine too.

http://family-live-love-laugh.blogspot.com/
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cmontagDecember 1, 2008 at 11:15 AM
Good Morning,

I noticed my son's appetite decrease with he was first put on Keppra and when they increase the dose. I also noticed that Keppra also gave Ben muscle weakness(which can be a side effect). For weeks after we put him on the drug or upped it, he didnt want to put much (or any) weight on his legs.

Good Luck!

Carrie (Mom to Ben- Epilepsy and Mild CP) Oconomowoc, WI
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ErinDecember 1, 2008 at 3:24 PM
Okay here is your letter you need to name 10 things that start with it.

How about the letter A
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momtoablessingDecember 7, 2008 at 9:21 AM
We are tackling a huge appetite problem with Audrianna right now she hasnt eatten much since november 14th we have talkef to her dr, her dr at shriners, her neurologist, and her gi dr she sopped eatting after her big seizure at school. Shes not on keppra tho we were on it shes on depokene. Shes been 37 inches tall since I want to say june and shes been 28lbs for awhile now.
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