Sunday, November 21

seizures & hot wheels

Does Wyatt have seizures? What kind?
Are they controlled by medicine? If so, which ones?

and....

Wyatt has a very cool wheel chair, when did he get his first?
Is it different than a special stroller?
And what kind is it?

.......asks Sebastian's mama.

Oct '10

Wyatt has had a large handful of seizures. They are very subtle ones, usually with a rythmic twitch. I'm not sure what they're called....? His last seizure was last February. Wow-weeeeeee! That's so awesome. Fingers crossed, fingers crossed! And the seizure before that had been almost a year prior. We are seeing that it is his growth that effects them. He takes Phenobarbital (30 mg X 2 day).

It took us a long while (a couple years) to figure out the right medication for him. All sorts of concoctions and doses. With Trileptal, he had more energy and was more aware of his physical abilities. But it wasn't knocking out the seizures. Pick your battles, I guess. You can read this post to catch my drift about his seizures. Because the seizures have never stopped on their own, we have a prescribed nasal spray that we give him. It is heavy stuff but works effectively. Otherwise, it's off to the ER.
(fingers crossed, fingers crossed!)

Mother's Day '10
Wyatt got his Quickie by Zippie wheelchair
on his 2nd birthday in May 2008.
Beautiful Day!
Changed my life!
And his, too.
Read about my tender wheelchair feelings
as well as the day the hot wheels arrived.
So wonderful!
My parents threw a special & rockin' party
in honor of his extra-awesome birthday.
You can watch a snippet of it on youtube.
We did look at the special strollers as an option.
I think it was called a KidKart....?
But we knew that he needed something
more durable and long-term that was going
to give him the best support.
I felt kind of sick,
looking at the catalog that first time.
Was I really putting my kid in a wheelchair?!
Gross.
It took me a bit to warm up to the idea.
But I pictured a happy & supported little Bugg.
And that made the decision so much easier.
And joyous.

And I recently discovered that the
hot wheels make a great vacuum.
(hello, nasty! Yep, that's hair in the wheel.)
So there you go.

3 comments:

  1. Here's another question to add to your list: How did Wyatt get the nickname "Bugg?"

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  2. I noticed hair around Grant's front wheels the other day as well. Totally gross! Wonder why it does that.

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  3. Thanks so much! I really appreciated the links to the past posts for some background. I really understood your April 09 post. I feel like, ok, I get the CP but the seizures? It's too much. Sebastian is still having them and we are trying to find the right med combo. The newest one (on top of keppra) causes him to be so floppy with little head control and all the things he was doing before, he's not now. And he's still having seizures! I feel so lost and out of control with this area.

    Really thoughtful post about getting his wheels. We have a regular stroller and then a special stroller was given to us, we are using it for eating time as it needs some adjustments.

    Sebastian was born May 6, 2008. Birthday buddies!

    You are really great at saying a lot with few words and beautiful pictures.

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