Feb 8, 2008

Answers to questions part 1

Hey there, thanks for playing along an asking about our life! I hope this continues. Here are the first few questions I have received:

The amazing Suze from suzelsass wants to know:

Is he able to walk? and What does he think of all this blogging business?

He is unable to walk. He has very limited use of his left arm and hand, enough to use his communications device somewhat slowly, but effectively to play on the computer and let us know what he needs. Skylers form of CP is called Spastic Quad, meaning that all of his 4 limbs are affected, and that his muscles are spastic, or too tight.

As far as this blogging stuff is concerned, if it doesn't involve looking for pictures of the hot TV personalities on the computer, he isn't interested!

Next up is my old workmate/cubemate Kristi from GetKristiLove with this question:

If Skyler could instantly walk tomorrow, what would be the first thing you'd do?

Since Skyler has always relied on us to get him around, and generally been required to go where we want to, it would be up to him on where he wanted to walk. I suspect that if he could all of the sudden walk, he has so many placed he wants to go we would never see him again! I bet he would want to go hike somewhere, we used to talk him when he was small in his first jogging stroller up some trails and he liked that a lot.

Pezda from Pezda's Ghost has joined in the fun and asks: 1. I do know that there are varying degrees of impairment both physically and cognitively, how severe is Skyler's condition? 2. What are Skyler's long term goals (plans? hopes?)?

You are correct Pezda, there is a wide variety of involvement associated with Cerebral Palsy. CP is the umbrella diagnosis for any brain related injury that affects the bodies ability to control muscle groups. Skylers CP is the result of a brain bleed due to him being born very premature. He was born at 26 weeks, or about 3 months early. His brain bleed was not bad relative to some other kids, but was right in the middle of the part of the area responsible for muscle control. He can't walk, talk, do very much at all. Cognitively, he is probably about at a middle school age, instead of his 16 years, but that is a result of his missing out on a whole lot of life's experiences and not so much as that area of the brain being damaged.

As far as Skylers goals, he loves the TV News industry. He thinks it is fascinating and wants to do something within that area, possible research of their tape/electronic storage systems or something like that. He has toured a bunch of TV stations and gets a big thrill out of meeting the people he sees on TV.

And don't worry Pezda, I didn't know a bit about special needs and CP before we had Skyler...

Thanks for the questions everyone, keep them coming!


  1. Here's a relatively simple question...

    Skyler is a lovely and unique name. Is there any special inspiration for naming your son that or did you just like the way it sounded?


    What hot TV personality does Skyler think is the HOTTEST? :)

  2. Okay, you can disregard my obviously very ignorant question from previous post. See how little I know about CP? You're helping us all, here.

  3. hell, I don't think ANYONE really knows anything about special needs until they show up on your doorstep with all their luggage smoking big stinky cigars and announce, "hey, y'all! I'm a-movin' in!! FOR-FUCKING-EVER!!!"

    I like this idea-- maybe I'll pinch it next week.

  4. TG: As I mentioned in the comments for the last post, it's not ignorant. Who the heck knows what goes on until you have to live it anyway?

    Kind of like what BO said in his comment, in his own delightful way! :^)

  5. Thanks for answering my question... I sure wish there was a cure, cubie.