Thursday, January 19, 2012

Two Years and Two Blades

I almost missed the fact that yesterday was Kingsley's two year Shuntiversary. This is a very exciting thing in our world.

Kingsley has hydrocephalus - which means that there is too much CSF (cerebrospinal fluid) in the ventricles in his brain. This is a problem as it would just make the ventricles grow and put pressure on his brain causing damage. Years ago, people with hydro would've passed away or had severe cognitive impairments, but in the last 30-40 years, a shunt has changed the lives of people with hydrocephalus. It's like a little valve/pump device that is behind his ear, through his skull and into his ventricle. It drains the fluid out of his brain and through a long tube (that you can see under his skin if he's topless) down into his abdomen where it is reabsorbed by his body.  No pressure on his brain, no damage caused.

The one downside of this shunt is that it is not perfect. It can malfunction, become clogged, get infected or even break apart. It's quite common for people with shunts to need a shunt revision - in fact about 50% seem to need at least one surgery in the first year with a shunt. I think most kids need a revision by the age of five, but more and more I'm hearing about kids passing that marker just fine. Regardless of when/if there are problems with the shunt, at some point Kingsley will need the tubing changed as his body grows and gets longer.

For now though, going two years without shunt problems is pretty awesome and worthy of recognizing. So, yay for Billy the first! Here's to many more years in harmony. :)

Kingsley is borrowing some more new equipment! Up here in the cold, not-so-snowy north, we skate. By 'we' I mean most of the population except for people like me who just stay inside and make hot chocolate.... up until this year anyway. Jeff has been itching to start the family skating ever since I mentioned that I saw a mini-sledge at our centre in the fall. We all got skates for Christmas and now Jeff is even more excited. So, today, Kingsley and I picked up the sledge.

Sledge hockey (called sled hockey in the USA) is a pretty major sport. It's essentially the same as ice hockey, except it's done on a sled (metal contraptions with blades) instead of skates. The other big differences is that the sticks they use are about 1/3 the size of a regular hockey stick and they have picks on one end. To move, you use the pick end, then flip it over to hit the puck. I actually know very little about the rules of hockey and thus, sledge hockey, nor am I even sure if I'm using the right terminology here!

I have no idea if this is actually a 'cool' sled, it just looked cool when I googled ;)

Kingsley is going to be on the toddler-skate equivalent of a sled - a platform with a seat and two skate blades underneath. We hemmed and hawed about giving him picks, but once I had him strapped in and just showed him the picks, it was pretty clear that he was going to want them. As soon as his belt was done up, he started rocking back and forth as if he was trying to get the sledge to move. I handed him the picks and he immediately held one in each hand and poked the ground for leverage to get moving. He's a natural!

The local sledge hockey league doesn't accept kids until they're 7 years old, so Kingsley has a few years before he's old enough to really get going, if he decides he actually likes it. In the meantime, I'll take lots of pictures... you know, just in case I ever need to do a Paralympic bio talking about how he's been on the ice since the age of two. ;)


  1. That is cool! I didn't know they had them. I look forward to the pictures when you get them. It looks like he is already taking to it.

  2. AH! LOVE the sledge! YAY for being a natural!
    I am so grateful for Kinger not having shunt problems. Thanks for explaining what it actually does because when people ask I really fall short of having an accurate answer. This was easy to remember! xo

  3. Happy shuntiversary!! 2 years is such a huge milestone!! SO EXCITING that King got a sled to borrow! We are going at the end of February to check out a game and to let Grey go for a whirl on a sled! Who knows, maybe they will be battling it out for the 2030 paralympic gold medal in sled hockey! USA VS Canada! :)

  4. I bet there was a time you never thought you'd miss a shuntiversary, or almost let it pass by! Yay for 2 years!
    Love the sledge! Can't wait to get Nick out on one - once I get the courage to strap on some skates myself!

  5. So awesome!!!! We have a team here (on Florida no less) and I can't wait for Charlie to be old enough to try it out. Can't wait for more photos and videos.

  6. That is a kewl piece of equipment.
    SO good that he already knows how to make it work.
    Can't wait for the rest of the story.
    Makes you want to skip a few years to see him at 7.

  7. oh that is so cool! I want to come when you take him out on the ice to try it out!!


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