Thursday, January 26, 2012

Moments

I still have them.

Those moments where your heart freezes when you find yourself faced with a random never will because of SB.

At first, when we got the diagnosis, they were big ones. Like: I won't get to hold him right after he's born. I will never get that family shot of the three of us when he's seconds old. I won't get to lie awake holding him on his first night. I won't get to smell him before they clean him (which is kind of gross sounding unless you've smelled a seconds-old baby and then you know that little bit of heaven I'm talking about).

We got through those moments, those nevers and it was just fine.

Eventually, I was even able to start spotting the wills - those tiny silver linings that sparkle or blind you with their brilliance every so often - things that we get to do now because of SB. The people we've met, the places we've gone, the moments that would've slipped past without notice 'before'.

But every now and again, a stupid little never pops out of nowhere.

Today, I was attempting to do Zumba on the Wii so that no one except Kingsley and Rachel had to be subjected to the awkwardness. There was a buff, extremely talented, animated guy doing the dance and out of nowhere I thought: Kingsley will never dance like this.

*squeeze*

Then reality tapped me on the shoulder in the form of my flailing reflection on the TV and the vague memory of what Jeff looks like when he dances. Yeah... Kingsley will never dance like that guy. That was a given, SB or not.

Moment over.

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. ;)


Sunday, January 15, 2012

*TWO*

My sweet little boy turned two today.

TWO.

Two years ago he was born. I get so emotional when my children have birthdays. Remembering their births is so lovely, there just aren't words for how it feels to bring a child into the world. It's magical. Kingsley's birth was no exception, but since I've gone on and on about his birth day at various times, I will spare you today. ;)


I know it's kind of cheesy to say that I'm inspired by my own son, but I truly am. He doesn't do anything that any other kid doesn't do. He just goes about his days, his weeks, his year learning, trying, playing and developing. But when Kingsley does it, he's defying odds. 


I cannot even begin to count the number of times this year I have been reminded of the brilliant words my friend, Cassie said about her own son, Caleb: I've seen him do things I didn't think he would ever do. So many moments this year, I have seen Kingsley do things that amaze me. Things that I wasn't sure he would ever do. Things that if you told me one year ago today: this is the year Kingsley will do THIS, I would probably have doubted you.


This year, Kingsley showed us for the fourth time that he is a fighter. That he will bounce back. That he will continue to be resilient. He learnt to play. He learnt to hold his own cup. He learnt to hold a spoon (although, he did also learn to throw it instead of use it to eat. Baby steps). He learnt to eat. I forget that a year ago he was barely eating solid foods at all, nevermind finger foods, that he didn't even start eating solid food on a regular basis until the spring and that I still have a cupboard shelf full of baby food because he only just stopped eating it a couple of months ago. He learnt to communicate with us... in ways other than words, but he does get his point across! He learnt to sleep through the night - ALLELUIA!!  He learnt to roll over both ways (again). With support, he got up on his feet for the first time.


This year, Kingsley learnt to MOVE. His world grew exponentially at the end of the summer when he learnt to make his Bumbobile GO. And then his dynamic stander. And then his wheelchair. And then his body as he learnt to roll and twist and wiggle and finally crawl. Alongside all of the moving, Kingsley also learnt to sit. On his own, on the floor, with his hands up, playing, reaching, clapping, slipping into an Elmo's World coma.

It has been a big year for my little rockstar.


Yesterday, we had a little party to celebrate the big year that he has had. He was not that impressed. He cried, a lot. Covered his ears, his eyes, whined, and then finally accepted that no one was leaving and so joined in the festivities. What else are you going to do when you're already all dressed up, right?


Besides, there were presents. Can't be grouchy when there are presents. 


Right beside him, cheering him on every step of the way, were his two bestest friends and biggest fans:



We did it all over again today, because that's just what you do when you're two.




 Kingsley's second year was incredible. It was not without heartache, frustration, and impatience, but those things were so overwhelmed by the joy, excitement, and pride at the incredible kid Kingsley developed into this year.

I am so excited to see where he goes in this next year.

Happy Birthday, Kingsley!!

We love you so much!

Thursday, January 12, 2012

Birthday Season

There's this cyclical thing that happens in our household. It starts with Christmas and the discussion of Jesus's birthday. Without fail, it leads to: "Mommy, when is MY birthday?" My niece, Kamille's birthday comes first. She turns the same age that Rachel is, which is an even that pleases Kam quite a bit. It also spurs Rachel to literally start counting the days until her birthday, when she will again be OLDER than Kamille. Between January 9 and May 23, we have Kamille, Kingsley, Auntie Kristi, Uncle Kevin, Grandma Marilynn, me, Aunt Crystal, Uncle Connor, Rachel, one of her BFF's Eric, and then finally Cordelia and my brother, Dave. Jeff is in June, but by then the girls are over it and counting the days until we can start it all over again.

This weekend is not the first party for us. Since my sister and her crew were here over the Holidays, we decided to have an early party. For me, it was a test run to see how Kingsley would handle things.

 oh, he's playing bashful. see that smile? he loved it

 more! more!

 yay!! sing it again! sing it again!

 he didn't blow them out, I had to do it for him. he just wanted to look at them and make us sing again

 Kam's an old pro!

love this big five year old! she picked the icing colour ;)

So, I have three days. Two until his party, three until my baby boy is no longer a baby. I can't believe he's going to be TWO. Reliving his birth this year is so different from last year. I think most people wouldn't understand when I say that this year we are so far removed from the SB stuff, considering the fact that we just got his first wheelchair, he's starting speech therapy soon, we're talking new braces for him, and a few other not-so-typical things are in process. That's all just life stuff though, just the same way we're shopping for new boots for Cordelia, teaching the girls to skate, and finding new ways to challenge Rachel's brilliance. Two years ago, we were drowning in the unknown and preparing ourselves for surgeries. A year ago, we were drowning in the unknown and preparing ourselves for another surgery. This year, we're wondering where we can get a sledge so King can go skating, too. We're wondering what to do with the toy store that exploded in our house last month. We have simple, pointless problems. We are just. so. lucky. 

Are you ready for Elmo cupcakes? I sure am! 

Sunday, January 8, 2012

Full of Awesome

Blogger ate my last post. It was a whole year review, but only half posted and then I have not had the motivation to redo it. I hate when stuff like that happens! I know, I know. Those of you who read it are hanging on, desperately waiting for the whole thing ;) One day.


I have a good reason for my blogger-slacking. Kingsley has been doing SO MUCH that I literally dread having to do posts for each and every amazing thing that comes up. It feels like everyday he springs something new on me.

So, here is my attempt to recap Kingsley's last 6 weeks or so.

He started crawling. Rachel started crawling at 7 months, Cordelia at 8 months, Kingsley at 23 months, but who's counting! ;) Actually, it caught me so off guard that I left him in the upstairs hall one day with the girls and answered the phone in my room. When I came back, the hallway was empty and I nearly keeled over in panic. He followed the girls down the hall and into Rachel's bedroom, a nice red rugburn developing on his pretty little bare knees. He was pretty proud of himself. It's a bit of a lopsided commando crawl. I had halfheartedly left up the babygate at the top of the stairs after Cordelia stopped needing it. I've never been so happy to use it!


Other big news... he got his wheelchair! This feels like it deserves it's own post, for sure, but here you are. Yay! It's harder for him to move around the house than his stander and Bumbobile, but he does love it. He can throw quite the tantrum if you dare try to steer him or get him to stop/go when he does not want to. Unlike Rachel and Cordelia whose biggest fear seems to be getting left behind in a store aisle, Kingsley takes off and couldn't give a care in the world as to where I am. The world is his playground. :)

I couldn't get a shot from the front. he won't sit still! 
I sacrificed my toilet paper roll just to get these

His upper body strength is getting a little bit ridiculous. He is doing feats of bravery that make my heart leap out of my throat. OK, so he is no Aaron Fotheringham, but in his own way he is becoming quite the daredevil. He has learnt to wheel up to things (like the fire place mantle), grab the edges and pull himself OUT OF HIS BUMBOBILE. What the heck! I mean, really. Consider that he has no functional use or feeling below his hips, the Bumbo is a deep, heavily supported seat, and you can kind of see why this both amazes and horrifies me. He has also pulled himself out of his bath seat by grabbing onto the side of the tub (I've watched him do this twice, so dumbfounded that I didn't think to intervene). Today after I had gotten him out of the bath, he decided to do chin ups on the side of it. Incredible.

action shot - he's up off his legs here, just holding on

Bedtime has also developed a few problems. He woke up one morning with two welt-like marks on his leg, one on the front at the top, one on the back at the bottom. Seems he had poked his leg through the bars of his crib and twisted for quite some time. We put the bumper pads on and he is slightly less impressed with this addition. To say that he hates them would be an understatement. He spends most of his nap trying to dispose of them. 

poor little guy in his cell...

What I love most about Kingsley learning these new things is the look on his face when he does it. It's like he KNOWS how awesome he is. His whole face lights up and his eyes twinkle with such a mischievous pleasure, I can do nothing but laugh and cheer.
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