Thursday, November 21, 2013

Max and Ruby

A few weeks ago I entered a random contest on Facebook through Koba Entertainment and ended up winning four tickets to see Max and Ruby live along with a meet n' greet. I enter random things like that all the time, so I wasn't really expecting to win. When I did win, I had that moment of panic though: can I accept this? I emailed them back right away and asked about accessibility. You just never know. The PR person was great, said she'd notified the venue about our needs.

Kingsley is a huge Max and Ruby fan. Anyone who has seen the show seems to either love it or hate it. Simply put: children love it, parents hate it. I actually don't mind it that much. It makes Kingsley laugh. I kind of admire Ruby's patience with Max. And Grandma reminds me of Jeff's mom.


The kids were incredibly excited to go, all three of them. They were bouncing off the walls as we got ready to leave. Jeff had no desire to come had to work late, so it was just me and the three monkeys. We arrived early and picked up our tickets. As soon as we handed them over at the gate, the nice man there informed me that we didn't have a wheelchair seat and immediately went back to the ticket area to fix that. The Meet n Greet people had also not been prepared for a wheelchair backstage, but they figured out a solution quickly. Very nice people.

I tried very hard to prepare King for what he was about to meet. Little animated characters are one thing, ginormous costumed adults are something entirely different. I couldn't prep him enough. We went through the door and Kingsley just froze. Wide eyed, mute. He wouldn't high five, he wouldn't wave, he wouldn't do so much as a thumbs up in their direction. Cordelia also froze. Rachel acted as though Max and Ruby were her long lost BFF's. I could only stand by and laugh.


The show was very entertaining. The kids loved it, we had great seats. No, their parents weren't there. ;)

Monday, November 18, 2013

Casts Off

The casts came off today.

It was a very strange day. Kingsley didn't want to take the casts off. He kind of gets set in his ways that way, once something is a certain way it has to be so. I don't think he was actually attached to them, but we did make the mistake of calling them 'Thomas blue' to match his Thomas costume and so he was very sad that he'd have to have his Thomas Casts taken off. He's very sad that Halloween is over.

His casts were cut off without any drama (though don't you have that moment of panic where you're sure that the saw is going to accidentally slice through skin??) and his surgeon came in to check on him and see how his legs had healed. She was very happy, they're straighter than even she thought they'd be able to be.

Kingsley lay there as the three of us stood over him - the man with the saw, the surgeon and I. I was watching his legs as we were chatting and suddenly I noticed something.

"He can't kick."

His surgeon tried to reassure me, he'd probably need some time to strengthen the muscles again, he'd get the strength back...

"No, I mean he couldn't kick. He can't do... that."


video

This whole thing came about because Kingsley has a bit of hamstring, but no quad. He can pull his legs up, but not put them back down. He bends at the knee, but not straighten. Not at all, ever. He pulls his legs up, bending his knees and unless gravity pulls them back down, they stay there, bent. 

"IT'S A CHRISTMAS MIRACLE!!" the saw guy seriously said that with a huge grin and I almost high-fived him. 

His surgeon thinks it's more likely that he was so tight he wasn't able to push back against it, but she couldn't say for sure. We will have to see what happens next. 

I made him do it over and over and over and over. We got home and I made him keep doing it. 

In. Out. In. Out. In. Out. 

I was so excited! 

You know the term 'bittersweet'? It pretty much defines SB. Right in the middle of giving King another thumbs up for kicking me I heard this bored voice in the back of my head: so what?

So what. 

Really, what does it matter? He isn't going to walk. He isn't going to stand. It's very sweet that something new and unexpected happened, that the surgery was such a success, but nothing really changed, that's the bitter truth. 

Wahn, wahn, wahn....

I am very thankful that the surgery was such a success. I'm trying to see this new little movement as a sign that he really did need the surgery to happen. As a parent, entering the world of 'elective surgeries' is a very scary place to be. Potentially putting Kingsley through a surgery that ended up being useless somehow making things worse would be dreadful. That didn't happen, so huge sigh of relief there. 

Before and After: the top is before, which should be obvious. This is as straight as his legs would be when he lay on his tummy. His feet are upside down, sorry, but you can still see how pronounced his 'ballerina foot' was compared to now when it's just a foot. 

Tomorrow, we see his orthotist and he will be fitted for new AFO's and we will talk about RGO's. Kingsley has loved being able to be lifted into standing at any time with his full leg casts/splints on the last 5 weeks. He has finally expressed an interest in standing and walking, which has never happened before. This is perfectly timed with new gear that will get him more independently upright than his stander. He will need a lot of motivation to use RGO's and he seems to have it. Fingers crossed for our next adventure.  


Friday, November 1, 2013

Almost Halfway

Kingsley is still doing great. He gets his casts off on November 18. We saw the surgeon last Monday and she took off his big white casts and replaced them with lighter blue ones (to match his Thomas costume, of course!). I finally got a look at his legs and his incisions. Well, sort of, they were under bandages still.

It all looked good! The surgeon said I could take off his zimmer's to give him a break and some air, but he doesn't really care if he gets a break or not and his bare legs kind of give me the hibbie jibbies. I'm so afraid of messing things up. Once a day I take them off, inspect his legs, have him bend a bit and then I put them right back on. I did end up taking the bandages off all of the way to see the incisions. I really need to toughen up because there was a lot of squeemies and even a bit of nausea. They look great, they're healing well. I just couldn't get Molly Weasley's voice out of my head (please, someone tell me you know what I'm talking about).

His legs are so much straighter. It's so strange. The bend and tension in his legs was so much a part of him, to have his legs just straight and flaccid is a little disconcerting. They seem really long!

the top ones are his legs at rest before surgery. that's how his legs pretty much always were.
the bottom are one week post-op when he got his new casts. his legs rest a bit straighter than that even.

Kingsley is still doing great and is completely unbothered by his casts or splints. He moves around just fine (the splints are FILTHY) and he hasn't had any trouble sleeping, which is good because I'm going to make him sleep in these splints for the rest of his life. He does great in his stander.

So, yup. Halfway there now. Still incredibly grateful that this is going a million times better than it could have gone.

Halloween 2013

The last few years we have gone to a mall for Malloween, but this year they announced that they were no longer doing it. Looking at the weather report, I was panicking. The day before Halloween, a second mall announced that they would do Malloween. YEAAA!!! Whew! Thomas does not run well in the rain.


It worked out perfectly because it poured rain yesterday! Just downpoured all day long. We kept thinking it would let up, but it did not. We hit the mall and made our rounds there. It's a small mall, which was perfect.


Now, in the online world wheelchair costumes are not that uncommon, you can Google and see hundreds of them. In my real world, they don't exist. I have never seen one in real live other than the ones that I've made for Kinger, not before and not after. So, pretty good assumption that no one else around here has ever seen one either, especially based on the reactions he got at the mall. Nearly everyone we passed stopped to comment or stare. Kids came up to touch it, people parted to let him through, many of the store employees gave him extra candy... Kingsley was a little celebrity. It was really cute.


Unless you are Rachel and you are dressed as the BEST Tinkerbell there ever was and you're even wearing REAL MAKE UP and have your best Tinkerbell smile permanently plastered to your face... and no one notices because your brother is a rockstar. About halfway through the mall she asked if she and Cordelia could go ahead without us. She did not like being overlooked, the poor thing.


It was still pouring when we got home, so King had to stay at home while the girls and I hit the few houses in the neighbourhood. The handfuls of candy for braving the weather definitely cheered Rachel up.

Friday, October 25, 2013

The Little Bull

It started with Cordelia. She and Kingsley like to play. She's a bit of a rough-and-tumble kid, so she appealed to King's daredevil side and started tossing his wheelchair around. She'd push him, he'd go flying down the hallway, hands raised and a big scream flying out. It evolved into him spinning around and chasing back after her for more, then just him chasing her down. Somewhere along the line, he started running into her. At first she thought it was funny. It's not funny anymore.

I first realized it was a problem when he almost took out an 18 month old at preschool pick up. He had that gleeful look in his eye that he gets when he and Cordelia are playing. Cordelia and Kingsley and I have had many talks since then about not running into people and not enticing anyone to run into them.

It's not working.

Two days ago, he plowed into Cordelia unprovoked and when she fell down, he attempted to roll on over her. Ughhhhh...

he always looks so innocent...

Let me tell you something: it is really awkward disciplining a child on wheels. When I put Cor or Rach in a time out and they didn't want to be there (shocker) it was very easy to pick them up and plop them back into their spot. It feels wrong to put King's brakes on and park him in a corner. It felt more wrong to put the brakes on his stander, because he can't take those brakes off. I could also put him on his bed, his booster at the kitchen table, his carseat and he wouldn't be able to go anywhere (but I don't). It's strange having so much control over a child his age. It's creepy. Until he started seeing everyone as his personal matador, I haven't had to discipline King much at all. He's a pretty easy going kid whose biggest offense was trying to speed down ramps. This is going to take some figuring out for both of us.

In the meantime, please keep all red capes away from him, okay? Or just watch your back.

Wednesday, October 23, 2013

Thomas the Train

Kingsley, like most kids his age it seems, has become infatuated with Thomas the Train, so it was an obvious choice for his costume this year. After the success with his pirate ship last year, I'll admit I was a little nervous. Fortunately for me, my cousin Natalie moved here last month to take a job at the big theatre here and she's in charge of props. She's crafty. ;)

We started with a box and a 'blueprint' as Rachel fondly called it. I tried drawing pictures of how I thought it could work.

my supplies in the top right: boxes; extra wide, black gorilla tape; red electrical tape; yellow electrical tape; blue spray paint; plumbing piece; and black spray paint that I didn't end up using

Second came cutting, which is extremely scientific and basically involves me dropping a box on Kingsley's head, taking it off, cutting, putting it back on, repeat, repeat, repeat until I realize the box is all wrong, toss the box aside and start again with a new box. I just cut space for the box to slide down over his wheelchair and rest on the various points along the side between his wheels and the chair. Then cut a bit out for his arms to reach the wheels easily.


Next came more technical work - tape. I bought this incredibly strong tape called Gorilla Tape. It makes duct tape look like stickers. I taped all the seams and bends and any point I thought might need reinforcing. This also makes it a tad weather resistant since we do live in Canada and there's a decent chance we may have rain or snow on Halloween.


Once taped, I spray painted it blue. And then painted it again because I'm a very uneven sprayer.


That's when Natalie stepped in and went to work turning a blue box into Thomas the Train.


She used electrical tape for his red lines and his yellow and red #1. We used more Gorilla Tape to make his neck (?? head??) and his bumper in the front, as well as his second set of wheels. His funnel was a random plumbing thing we found at Home Depot that was taped on with more Gorilla Tape and then stuffed with some fluff that Nat just happened to have lying around. Natalie drew his face on paper that we stuck to spare box scraps.


I had to fit his over the front of his wheelchair and leave the back open because of his casts and wheelchair modification in the front. Last year, the ship just dropped over top of him and was closed in the front and back, making it easy to lift him straight up and out. With his casts, there's no lifting him straight up. It tips forward off of his chair and I can get him out that way.


He is quite smitten with it. He had a Halloween party at his playgroup this morning and was so excited to drive Thomas around. For his actual costume, I tried to copy Thomas's drivers who wear blue suits and ties with a blue hat. I couldn't find a hat anywhere and a blue sweater (that he took off) and bow tie were the closest I could come to the rest.

If you have a kid on wheels and want more costume ideas or DIY instructions, take a look at:  http://wheelchaircostumes.blogspot.ca/

Sunday, October 20, 2013

Recovery

Kingsley's recovery from his tendon lengthening has been so interesting to watch. It fascinates me especially since I had my own ortho surgery last spring. To say that our recoveries are night and day would be an understatement - he puts me to shame.


Kinger was discharged Wednesday, the day after surgery. They were able to modify his own wheelchair with a foam covered board to rest his legs on. His casts make it difficult for him to sit back all the way in his chair, so he ends up being slightly reclined all on his own, like they wanted him to be. Huge relief.


He also fit in his own carseat! All of these things I was worried about and so far both are just fine.


And, he can (just barely) fit in his stander!


As for how he is doing, he is amazing. They gave him Tylenol and Advil in the hospital, but I haven't given him anything since we got home. He hasn't shown a moment of discomfort or complaint. He was tired the first two days, going to bed early and sleeping solidly, but that's it.  He can commando crawl, dragging those beastly things along behind him and he can even roll himself over both ways still, it's quite amazing to watch. He's also figured out how to sit on his own. I realize these things seem like mundane feats for a 3.5 year-old, but considering he cannot feel anything from about his waist down, he has to work out balancing without feeling what he's balancing on and now his two biggest props (his legs) are bound in a completely different position than he's used to. So... amazing, yep.


Tomorrow, he has these casts removed and new ones put on. I'm not sure if he'll be wearing these zimmer splints the whole recovery or not. Right now, he kind of reminds me of a hockey goalie. How very Canadian ;)



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