Wednesday, November 30, 2011

All I Want for Christmas...

My two nieces and my sister watched Never Say Never, the Justin Bieber movie. And when I say 'watched' I mean they had it on Netflix and watched it about a dozen times in about as many days. And when I say 'a dozen' I really mean three. They became big Bieber fans. So, when I was at Costco a couple weeks ago I was thinking of them and I grabbed Justin's new Christmas CD with the intention of listening to it a few times and maybe ripping it for them passing it on to them. However, it turns out my nieces aren't the only ones who love "Justin Beaver" because all three of my children have clung to this CD like it's the best music in the world and they insist on listening to it all. day. long. Truthfully, I don't mind. I love Christmas music and if you haven't heard the CD it has a remix of Mariah Carey's All I Want for Christmas which is one of my favourites.

Over the last couple of weeks while this CD has been on repeat, the words of all of his songs have blurred together and played in my head even when it's not on. There's one message that comes up over and over in so many of the songs: All I want for Christmas is you. Tell Santa I'm good this year, my present is standing right here. If you're the only thing I ever get for Christmas then everything I've wished for has come true. I realize Biebs is probably singing about a girl, but when I hear these words, I look at the kids and I think: YES.

I have been walking around the house, just savouring the drawn out Holiday buildup. The lights are up outside, Buddy the Elf has returned, the mail has gotten really exciting, we're going to put the tree up this weekend, lists are being made and checked twice, pictures are done... we're in the Christmas spirit and there's this feeling of just soaking it in and enjoying it all. A true appreciation that we are so incredibly lucky to all be home, to all be healthy, to all be together.

When I was thinking last week about Kingsley being in the hospital a year ago, I remember the rush to do things in the week leading up to his surgery. I remember doing my online shopping from beside his hospital bed. I remember the heavy reality that with one sudden fever, we could be spending our Holiday season in the hospital instead of at home. Getting released on December 2 was one of the best Christmas presents ever.

And the year before that with the sudden scare and hospital stay mid-December before he was born.

We just don't have a lot of luck with this month. Kind of like September.

Which is why I have one wish for Christmas. Just one.

I want Kingsley to be home. 


Because what I didn't want is for his PT to have concerns about his legs. And I didn't want the concerns of September to be brought up again. I didn't want to see their faces when I mentioned some things I had noticed. I didn't want to see the look on my moms face when I told her the concerns that people are mentioning and see that she has the same concerns.

I don't want to hear back from the neurosurgeon and I don't want to know what the inevitable MRI is going to show. I want to continue appreciating that we are all home together and not subconsciously start planning how we are going to get through this month if we get bad news and have to be split up.

It could be nothing. It could all just be explained by... something else.

Or these changes could all be related.

I think we might need a Christmas miracle on this one.


Saturday, November 26, 2011

Rifton Dynamic Stander

Yesterday, we picked up Kingsley's newest set of wheels: a Rifton dynamic stander!

It's fantastic.


As soon as we walked into the room to have it fitted for him, Kingsley was wiggling to get out of my arms and get in it. He literally would've pushed himself off the bench and wiggled across the floor to it if I would have let him. When we held him up and started strapping him in, he immediately was trying to release the brakes and get going. And once we did release the brakes and let him go, his smile was HUGE. Ear to ear, nonstop, ecstatic smiling from my little boy, the kind of smiling that just makes a roomful of adults melt and makes you forget how expensive this little piece of equipment is. Worth every penny.


He immediately generalized his wheeling skills from the Bumbobile and wheelchair trials to this. The wheels are obviously much bigger and a bit lighter to roll, so it took him a little while to really learn to control it. His laugh when he realized he could push and coast was contagious. He also realized he could spin and just kept spinning, laughing, spinning, laughing, spinning, laughing... We had the whole store out watching him roll around, grinning like it was Christmas morning.


King was quite upset when we took him out of his stander and was so excited to get back in and show off for Jeff when he got home. He's also enjoyed exploring the house from a little bit higher. Drawers are very exciting.


The folks who we bought it off of said that they've never fitted a kid so young for a dynamic stander or for a wheelchair for that matter. He said that parents and therapists are usually not yet ready at this age. It's too bad. I can't imagine how boring life would be for Kingsley right now without his wheels.

The Big Scar

I do have some exciting things to post about, but before I get to that, I just wanted to post a couple pictures of Kingsley's decompression scar. My last post had a big ugly picture of his scar at a couple weeks post-op. It's dreadful, isn't it? It's my own son, my amazing rockstar and it still gives me the shivers to see that enormous, raw scar down the back of his head and neck.
This was just before getting the stitches removed.

This was just after getting the stitches removed

Fortunately, it looks nothing like that now. I wondered for a long time how it was ever going to heal and become less noticeable or if people would forever be staring at the back of his head. It did! I think the only people that notice it now are the people who cut his hair, but even they have never mentioned it other than to spend a few extra seconds parting and brushing in the back when they think I'm not looking.

So, for those of you who don't often get to see Kingsley's head in real life, here is how it looks now:


It's so amazing what the human body can do, isn't it?

Thursday, November 24, 2011

One Year

One year ago right now, I was in this room


 After putting my baby on a bed and watching him go rolling through these doors


I was holding my breath, heart in my throat, not thinking, not thinking, not thinking about what was happening.

Watching the clock tick on, minute by minute, hour by hour.

Waiting to run and see my baby.


It's strange how much this anniversary has  been on my mind. Although we obviously are not celebrating, it's so fitting that the one year anniversary of Kingsley's decompression surgery is on the American Thanksgiving, because I do not have words to say how thankful I am that one year ago his surgery went the way that it went; that I didn't think on that day about what could have happened, what almost happened, and what would have happened. Those are all the things that I'm able to start thinking about only now and it terrifies me.


It wasn't Kingsley's first surgery and it wasn't his last. There's no guarantee that he won't need another decompression at some point. He'll need to have surgery for his shunt again. Maybe many shunt surgeries. There's a good chance he'll need more detetherings. This is our reality.  Not having those surgeries would mean not having Kingsley, which is something I can barely wrap my head round. And so we go through it.

But right now, today, he doesn't have to. Today, we went swimming and he did amazing. He paddled with his arms, floated on his back by himself, and blew bubbles. Today, he asked for (and received) hug after hug after hug. Today, he had two candy cane cookies for lunch, because he wanted them.  Today, he smiled and played and pulled his sister's hair. Today is one more day that SB takes a backseat to life. We are so grateful for that.

Monday, November 14, 2011

We Met

I know you're all dying to know ;)

So, on Saturday our little clan all headed out for the SB workshop day at our centre. It was great! It consisted of a few information sessions on the anatomy of SB with levels/functioning information (check, check, memorized that bad boy last year), a discussion on equipment (which featured pictures of Kingsley in all of his various equipment pieces).

Probably the one piece of equipment we were not yet familiar with there were RGO's (reciprocating gait orthotics). For those of you who aren't in the SB world, I have no idea how to really explain them, as I never fully understood them until I saw them. They're basically bracing that goes up to the chest and if the person wearing them tips their chest backward, it pushes one of their feet/legs forward and mimics a walking motion. I think. I may be confused still. I only mention this because we've been looking into them for Kingsley down the road. They wouldn't mean functional walking like most of us do, it would mostly be for exercise and experience.

There was also discussion of hydrocephalus and shunts (check!), chiari malformation (check!) and tethered cords (check!). It made me realize that Kingsley is really making the most of his SB experience, haha. During this talk we got to see a SB doll. For real - a doll! It has SB, hydro, a shunt, Chiari and can have all kinds of spinal issues. You can even cath it and make it a boy or girl. I can't imagine ever needing one of these dolls myself, but it's cool to know they exist.

There was a presentation on the bowel/bladder issues. Nothing new their either! And a discussion of recreational activities for kids with SB. That was cool to hear about different things that are available in our area.

But my favourite part of the day was talking to other families. The day was geared toward kids with children 3 and under. I think there were 2 three year olds, 1 two year old, Kingsley, a 9 month old and a 6 month old. I feel like I'm missing someone here.... Maybe not. They had two families, one who we adore who has a son a year older than Rachel and the other who have a 15 year old son named Eric. Meeting Eric and his family was amazing. I imagine it would be the local equivalent of meeting Aaron Fotheringham. Eric is a wheelchair basketball superstar and he also plays sledge hockey. He and his parents were just so... reassuring. I sat there listening to them and thinking: THAT is the kind of family I want to be! They were just awesome.

We also had the chance to meet and talk to the other families there and a representative from the SBHAO. All of our kids were pretty different, but all definite rockstars. All in all, a very good day. I am really hoping we can do things like this more often!

Friday, November 11, 2011

Tomorrow, We Meet

You know how last May I was thinking that I was seeing people with SB everywhere I looked? Even right on my own street? Well, haha! Turns out I am not hallucinating after all!

Since May, I have met four families with kids with SB. Four! Bringing my total to six (including Nick and a baby girl who we met, but who don't live that close to us). It's nice. Rather awesome, really.

For starters, the girl on my street that I thought I saw really does live on my street and she does have SB. She's a gorgeous kid who walks, runs and has a smile that lights up the world. I spotted her a few times getting on and off the accessible school bus that stopped in front of her house. Then, one day King and I were playing in the front yard and she and her sister were outside and I saw my chance. He was testing out a wheelchair then and headed down the road in their direction. She looked up and saw his wheels. Her dad came out and we ended up chatting for awhile about everything. It was incredible to think that for two years we've been immersed in this world, never knowing that we had guides just four houses down.

The wheels really are a great ice breaker. I take the girls to dance class every week and while there a little boy with a walker came racing (no exaggeration) into the foyer and zipped around like he had boosters on that walker. I happened to have Kingsley there with his wheels. His mom saw Kingsley and came over to see what kind it was. I suspected from the way he walked that her son had SB so I said that Kingsley did and there ya go! One more family in our little network.

The big exciting thing though is that tomorrow our centre is having a SB networking and information day. The first of it's kind since before Kingsley's diagnosis. I've been told that there are 7 or 8 families, all with kids with SB age 3 and under. All in one place! I can't wait.

Wednesday, November 9, 2011

Awesome, Awesome, Awesome

"I don't know how to ask this, so I'll just say it..."
"I hope this isn't a stupid question..."
"That's amazing... I don't get how it happened."
"Yeah, explain that to me, I mean it's awesome, I just... how...?"
"So... I saw your Facebook status. How did he do it??"

It's okay, everyone asked. ;) The other day, I posted on Facebook that Kingsley had pushed himself up onto his hands and knees and then posted a picture of him there. I got a lot of texts, emails and phone calls. Everyone was really excited, but no one knew how it was possible! 


The truth is, I have no idea either. He just did it. 

He's been rocking from sitting in a cobbler pose to leaning forward on his hands, then back, then forward, over and over. Sometimes, one of his feet will pop out behind him (think of a really early pigeon pose if that makes sense to you) and then he won't be able to rock back and he'll be stuck until I rescue him or he wiggles the other leg free and flops down onto his belly. That's part one. 

While all of that has been happening, we've been working in PT on getting him to increase his arm strength by putting him on his hands and knees and having him hold himself there. He has gone from holding for about half a second to holding for about 30 seconds. He's so strong! 

Add those two things together and out of nowhere, five days ago, Kingsley went from cobra to table! He just pushed his hips back. He even rocked a bit, like how babies do. I was... ecstatic. I think it was a combo of his abs and hip flexors working and AFO's digging him into the carpet so he didn't slide backwards. Amazing!! 

Once he got there, he screamed. Loud. I think it freaked him out. 

Or maybe it was my screaming that freaked him out, who knows. ;)

Well, that was exciting, what can top that, right? Ha. Pssssht. 

Today, Kingsley and I were working on it again, trying to cue him to push his hips back again and get his belly up. Once again, he was hollering while up on all fours, but then he started moving his hands in under himself and I got a brilliant idea. We worked on that for awhile. I got Rachel all set up recording it on the camera... 

Sorry! The video is lousy, Rachel's five, what can I say? She doesn't get lighting angles yet ;) But, he's pushing himself up all by himself, my hands aren't touching him. 

Over and over and over I tortured him helped him do it. Then I gave up and let him relax, left him on his belly to play with a toy. I looked away to get the camera, put the cap back on and when I looked over at Kingsley again, he was PUSHING HIMSELF UP INTO SITTING ALL BY HIMSELF!!!  

Tears! Screaming! Cheering! And a chocolate bar that Kingsley inhaled in about 5 seconds. I tell ya, for a kid who doesn't like to eat, he sure can hoover back a mini Hershey's. 

He wouldn't repeat it, but I'm still giddy over seeing him do that. Unbelievable. 


And on that note, I want to link you to something that has stuck with me since January. Cassie is another mom blogger out there. It's funny how you can feel so close to someone you've never met, isn't it? Cassie is a huge source of encouragement for so many of us mom's of younger kids with SB. Her son Caleb is 6 and he defines Rockstar. Cassie was constantly telling me that Caleb was just like Kingsley once. Caleb took a long time to get where he is. Caleb wasn't always a walker. I have to be patient, Kingsley will show me in time. Then with this post, she showed me what she meant: http://themclellands.blogspot.com/2011/01/taking-scenic-route.html  Rarely does a week go by that I don't think of this post at some point or another. I have no idea where Kingsley will end up or what he will accomplish, but reminders like this and days like today make it very clear to me that I can never say never. 




that's for you Kris ;)

Halloween!


Oh, hush now. I know Halloween was a week and a half ago, but I had good reasons for delaying this post.

Firstly, as usual my kids were stinkin adorable and had a blast. We did Mall-O-Ween with our friends and Grandma as we do every year. It was not lost on me the irony of the pain I was going through a year ago, accepting the fact that Kingsley would be a wheelchair user, when this year I was incredibly annoyed that he didn't have a wheelchair to use! Instead, the poor kid just watched his sisters trick or treat from the stroller where he sulked and had Elmo try to eat his head.


After a quick dinner, I took the kids out on our street. Without suitable wheels for Kingsley to push, I carried him. And it started to rain. So, Kingsley went to the two neighbours who would be most excited to see him/us and then he went home to hang out with Daddy while the girls and I did the rest of the street. He was adorable - my little Elmo zipping to the door in his Bumbobile every time the doorbell rang. ;) He doesn't eat candy anyway.

But! The really exciting thing is what will happen next year for Halloween. See, the week of Halloween, we ordered Kingsley's first wheelchair and a Rifton dynamic stander. Which means that next year, Halloween will rock here! I am inspired by a few mom's in my circle who make a kid on wheels the coolest thing ever. Have a look here at Caleb: scroll down, scroll down, scroll down... BATMOBILE!! Scroll down a bit further and you'll see his incredible costumes from the last three years. Then there's Greyson who is the most ridiculously cute astronaut I have ever seen http://ourlittlegibblet.blogspot.com/2011/11/grey-astronaut.html  And then there's Nate the construction worker. I mean, come on!!

Kingsley has some big wheels to fill, but I think we can do it.

I may have to start planning now.
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