Sunday, January 5, 2014

Help Yourself

The other day, in the midst of holiday chaos, Kingsley dripped something on his shirt. This upset him. He wanted a new shirt. I was busy. 

Before that moment, the ridiculousness of such a scenario had never occurred to me. I (we all) had just fallen into that dreaded trap I swore I would never let happen: we were babying Kingsley. At that moment of frustration and annoyance, I looked at my nearly-four-year-old boy and said the most obvious thing...

"Go get it yourself." 

Despite the fact that we had built a completely accessible home, with an accessible bedroom, with an accessible closet that had low shelves and racks that he could access, I had just never before let him get his own shirt. How silly of me. 

That day, I showed him how to open his closet, pick a shirt, and take it off the hanger. Something my girls could do by the time they were two years old. 

Then came the next conundrum: he couldn't take off his shirt. Or put on the new one. I've been talking about teaching him how to do this, but always said I didn't know HOW. How do I teach a kid to put on a shirt while he's sitting on a chair? Enough wondering, we started working on it, figuring it out together. 

Today, Kingsley took off his PJ top and his undershirt all by himself. He was proud. I was proud. Another random milestone. 

My kid took off his own shirt. 

Who would've thought something so simple would give me so much joy? 

Next on our list is brushing his teeth. More excuses from me: he can't reach the sink. We brush his teeth while he's having other things done. It's another thing I have to stop and do everyday, but it will be worth it. And, really, it's past time for this stuff. 

So, I put him in his wheelchair, put a cup of water and his brush and paste on the counter and let him go. He dips his brush, opens the (Thomas, fluoride-free) toothpaste, puts some on the brush, then closes it. We each take a turn brushing, then he rinses the brush in the cup, lines everything up and carries on with whatever we're doing. He loves it. 

He's also able to be more independent in the bath, now that they aren't power-baths, trying to get him clean in the 30 seconds before he poops ;) We have time to let him wash his own body, help wash his hair... Basic stuff. Important stuff. 

Kingsley is turning four soon. Very soon. Time to let him grow up. 


Saturday, December 21, 2013

One Giant Leap Forward

I remember the glory of my children sleeping through the night, like, really sleeping straight through the night. That heavenly feeling of going to bed at night and knowing that I was not going to be woken up at all, just left to sleep... Bliss. All three of them sleep 11-12 hours a night still and it's delicious. They didn't always though, before they realized sleeping was where it's at, they woke up. A lot. So, when the change happened, I celebrated. 

That amazing experience is happening again in the form of diapers. As in, I don't have to change them. As in, they're not dirty. As in, hallelujah, the clouds are parting, we have SUCCESS!!!! 

It's amazing. I cannot state enough how much of a game changer this is for us. Nearly four years of all. the. time. ALL THE TIME. And now I've got it all figured out. BOOM. Merry Christmas to ME! 

To celebrate, Kingsley takes a lot of baths. Don't make me elaborate on why he didn't have a lot of baths before. Now, he bathes all the time. Anytime. He can take a one hour bath if he wants, I just let him play. 

And just when I was having visions of underpants, something else changed. He's wetting his diapers. Soaking them. I don't know why, it's so strange. He literally has never in four years soaked a diaper during the day or even really wet it. I am completely stumped. There's nothing obvious going on here, just that. Much better than the previous situation, but a bit confusing. Another riddle for us to solve.  

Thursday, December 12, 2013

Duck and Cover

I am so overwhelmed by SB right now that the last thing I feel like doing after the children go to bed is writing about it or thinking about it in any capacity. I feel stuck in a constant state of loathing for SB and all of the baggage that comes with it. But for the sake of documenting this little chaotic phase of my life, here is what we're dealing with. 

The Ugly: Yeah, that stuff. We're onto the next phase. I kind of thought, 'hey, we'll start this next procedure and it will work (or not) and that will be it.' Nope. It takes a lot of trial and error and tweaking and adding, subtracting, adjusting. Ugh. I'm so over it. More than anything, I wish I wasn't flying solo on this. I wish there was some professional here who knew about these things and could support and advise us. The first couple of weeks I felt quite desperate and flailing, like walking around blindfolded. Fortunately, my SB peeps have pulled through and I've tapped into the underground world of Moms Like Me who are willing to talk about the unmentionable stuff. Thank God

Speech: King is in speech therapy again. He flips his she/he, her/him all the time. At first it was awkwardly funny when he'd call a man 'she' or a woman 'he', but now it's downright frustrating. We're also working on F and the elusive K sounds. 


Food: I just finished an OT feeding group where I spent two hours a week trying to figure out how to get Kingsley to eat. I swear, my life revolves around getting things in one end and out the other. He hasn't gained weight in the last year, has barely grown. I need him to eat more and eat something other than cheese. It would be nice if he would voluntarily eat it as well. You know that saying 'kids won't starve themselves'? It's not true. For real, that's part of what I learnt. Kingsley falls into the small percentage of children who just doesn't want to eat a lot of the time. There's a long history about why, but I'm so tired of thinking about it. Long story short, he is making some gains here. I think I've managed to boost his caloric intake and he is getting more brave about trying new foods, and food in general. Yay!

Fine Motor: Kinger is also doing his own OT group, this one for fine motor school-related things like colouring and cutting. It's aptly named 'Cut and Colour'. He's doing great with it. For some reason, he is incredibly interested in doing both when in a small group. Not remotely interested at home. Ah well. Maybe that means he'll do it at school next year. 

Sports: This hasn't happened yet, but I've enrolled him in an amazing program called Making Waves. Starting in January he will have 1:1 swimming lesson, which is awesome. We've also borrowed the same sledge we had two years ago and I'm pumped to get him out on the ice... when our days are a little less booked. 

Surgery Recovery: He is doing great, now that his casts are off. His incisions have all healed ridiculously quickly and his legs are still good. I am super paranoid about them tightening up again though. Twice a day, I give him a leg massage and go through a bunch of deep stretches, then two more times a day I just do the stretches. It's time consuming and sometimes, the last thing I feel like doing. He also wears his leg splints to bed, which he's not complaining about. He's also had a bazillion appointments related to his legs. OK, maybe not that many, it just feels like it. He has new AFO's now, which required new boots and check ups. 

Other Stuff: Then there's all of the monsters lurking under the bed, the things I notice and wish I wasn't noticing. I feel like his back is wrong. I'm not sure how to explain it or what is going on exactly, but he's not straight. I don't know how to fix/prevent it. I'm not sure I want to think about it very much, but obviously I can't bury my head forever. He's also been coughing/choking a lot lately, which is where my brain goes crazy and tells me that he'll need a decompression RIGHT AWAY. That is the stuff of nightmares. Of course, it could be the dry air giving him a tickle or a cold or something simple like that. Oh, I just want it all to go away. 

And between all of this SB overload, we have Christmas. I adore Christmas and love extending the Holiday Joy as much as possible. I am trying very hard to not let SB trump that joy. 

Laura did our photos again ;) http://www.everylittlephoto.com/

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.
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