Showing posts with label walking. Show all posts
Showing posts with label walking. Show all posts

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."

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.  

Thursday, March 14, 2013


In the midst of our crazy move and unpacking frenzy, we had an appointment to have Kingsley casted for his RGO's. RGO's are Reciprocating Gait Orthosis. They are basically braces up to his waist/torso with a spring action so that when he leans back the right way his foot will kick out. Lean the other way, the other foot kicks out. It simulates walking for someone who cannot walk themselves.

They receive mixed reviews in the SB world. Older generations remember them as torture devices, but current parents of younger kids like them. From talking to some PT's about the way things used to be, there used to be more of an attitude of 'walking at all costs', which I don't feel like there is anymore. Wheelchairs weren't even mentioned until kids were 3yo and all walking options had been addressed. Jeff and I know that RGO's are not going to be a functional means of walking for King. We have realistic expectations of this being an exercise for him, another way for him to be up and doing something. I don't plan on taking him out around the town or walk to school or anything.

My reason for wanting Kingsley to have RGO's is that I see a future for him in which there will be some way for him to be upright, functionally, if he wants to be. I don't know what it will be or what it will entail, but technology is progressing so quickly that things like Segway's and Exoskeleton's are only going to open doors. I want him to be confident being upright and for his body to know what it feels like to move this way. I want to provide these opportunities for him now, just so that nothing is closed to him later.

Which brings me to his casting appointment.

We had our initial appointment with the orthotist a few months ago to discuss it and get the paperwork started. Sidebar - these fun little braces will cost over $12 000. For real. Fortunately, we have a program here called ADP that covers 75% of the majority of equipment we will need for Kingsley, but do the math and *choke*, these are no joke.  There was very little chance that ADP wouldn't cover them, we weren't worried about that, but they were a little slow on their approvals lately, so we just let them take a few months to sign back the form while we dealt with house stuff. Now, the approval was in, we were set.

Unfortunately, the orthotist gave us some bad news. Kingsley's legs are too tight. He can't straighten his knees and his hips are getting tight now also. Kinger has some unique functioning of his legs that doesn't always work in his favour. One is that he can flex his hips and bend in his knees a bit. This tucking action allows him to lift his feet a couple inches up off the floor when he's seated on a chair (use your abs and hips only to do this, that's what he has). It allows him to also tuck and get into an all-fours position. He can't, though, squeeze his knees in to close his legs, nor does he have any quad at all, so when his legs tuck in, he can't push them back out, they either fall down naturally or they stay. Mostly, they stay. He sits crossed legged, he sleeps frog legged on his stomach, he kneels all splayed out. He's only ever stretched out when he's in his stander and even being in that 1-3 hours a day is just preventing him from getting tighter, not loosening him at all.

What this means is that Surgery #5 is coming up. They will have to release his tendons, both legs and his ballerina foot/ankle, followed by casting for 6 weeks. Yikes. This will allow him to have straight legs again and a foot that more easily gets to 90 degrees. It's not a surprise, we knew at some point this would have to be done.

It is important that we do this surgery first, even though technically they could accommodate all of tightness in his RGO's. Accommodating may make them harder for him to use them and for all of the reasons mentioned above, we really want this to be something that Kingsley does not hate or resent. We will be heading back to ortho in a couple months and see what she thinks, start to plan. I'm hoping to wait until the fall. I have my own ortho surgery in two weeks (eeek!!!) and it'll be a couple months before I'm back to normal, followed by summer with a brand new pool - hello! Can you imagine how horrid that would be for poor King?? Six weeks in casts will be hard enough.

This surgery doesn't scare me that much. Surgery is surgery, so it doesn't thrill me or anything, but surgery on his legs seems so much less intense than, you know, brain surgery. One day at a time.

Tuesday, April 26, 2011

How Old is He?

"How old is your boy?"

"Fifteen months."

"Fifteen months. Right..."

There's a pause. I wait, wondering if he's figured out how he's going to ask it.

"He's a cutie. Such big eyes!"

"Thanks." I smile, finish putting my boots on and pick up Kingsley who is sitting propped against a wall by the doorway.

This is not the first time this other Dad at preschool drop off has asked how old Kingsley is. He has a 14 month old who squirms to get out of his arms, toddles up and down the hallway, and runs crying from strange adults she bumps into. We see him twice a week and he's begun to notice that Kingsley doesn't walk.

The first time he noticed and asked how old he was, he sort of nodded in that empathetic way and I could tell he was thinking: late walker. The last few weeks, I've noticed him noticing more. Like how Kingsley doesn't try to walk, doesn't stand, doesn't sit independently even. How I carry him everywhere and rarely put him down. And how Kingsley is just fine with that. I can see the wheels turning and I know he can't figure it out.

He's a very nice man and his questions don't bother me at all, nor does the way he stares and puzzles over Kingsley's stationary state of being. He's not rude about it and I know he's trying to find the right way to ask without being impolite. I should just tell him, but I'm also still trying to find the right way to say it. Still.

I understand that Kingsley is not going to walk, not the way I imagined he would. Almost all of the time, I am okay with this. But that tiny little part of me that isn't okay, that is a teenie bit sad about wheels, that can't allow myself to think more than a year into the future - that part of me is having trouble blurting it out: My son has spina bifida. He isn't going to walk.

At 15 months old, Kingsley looks like any other toddler. He smiles and babbles and waves and plays shy. He accepts kisses from his sister and then pushes her away. He whines because he sees all the toys and wants to stay and play. He twists in my arms to have one last look as his sister runs off. If you look very, very closely you can see the faint line of a scar down the back of his head and neck, but hoods hid that all winter while it healed and only the woman who cuts his hair would notice it anymore. His legs don't work. That's hard to figure out, to pinpoint when you're just seeing him for short amounts of time.

My son has spina bifida. He isn't going to walk, but he is going to amaze you.

I will find the words soon.

Monday, February 28, 2011

Does he Walk Yet?

Of course this was coming. The point of no return. The time when it becomes blatantly obvious that something is 'up' with Kingsley. The time when people start outright asking me.  Perfect strangers asking me innocent questions I have no idea how to answer.  I've had a handful of encounters in the last month, each one equally awkward and full of me fumbling for the right words. It's not like I've had a year and a half to prepare myself or anything ;) I think the problem is threefold. One - these people jump out of nowhere with their darn questions.  I just get caught off guard. Two - I am one of those people who smile and giggle at the most inopportune times. Serious conversations, bad news, someones sickbed, I am the girl who reacts by smiling. The more inappropriate, the harder it is for me to wipe the stupid grin. Three - although I know full well that people mean well with their questions, sometimes people say stupid things. I usually have to pause and restrain myself and while forcing myself to say something polite, I usually just mumble mumbles in response.

So, here is how a few of these fabulously wrong conversations have gone. You know, so you can learn what not to say. You're welcome. ;)

Number 1, hospital setting

Lady wandering the halls: Oh, how beautiful, yadda yadda, how old is he?
Me: 13 months
Lady: Is he walking yet?
Me: No, he has spina bifida
Lady: Oh, I only wondered if he could walk.
Me: Um.
(Lady walks away fast)

OK, I blame the hospital setting for my assumption that people would know what SB was. She clearly did not. She looked at me like I had said 'No, he has a broken finger' like she had no idea why this random label would be relevant to her innocent question of whether or not he was walking.  Not that SB means you aren't going to walk or anything, but it explains why he isn't walking.  Lesson One: I live in a bubble. The people outside the bubble have never heard of SB.

Number 2, model home

Real Estate Agent: You like the house?
Jeff: Yeah, it's nice. We're actually looking for something more accessible though. Our son is going to be in a wheelchair.
REA: OH NO!!! Oh my gosh! I'm so SORRY!!!
Me: (stupid grin)
REA: How old is he?
Jeff: He's one.
REA: Oh, WOW! Are you sure? OMG, that's AWWWWWFUL.
Me: (grin gets bigger)
REA gives me a very puzzled look. Looks at Jeff, then back at me. Tries to figure out the joke. Decides I'm looney toons and only talks to Jeff after that and pretends I'm not there.

In my defense, it still seems a bit surreal. But really, the over-the-top sympathy responses are weird to me. I mean, look at Kingsley. What exactly are they sorry for? He rocks. Lesson Two: people think wheelchairs are the end of the world. *ahem* Not that I've ever thought that way or anything.

Number 3, shoe store

Sales Lady: So, is he getting his first pair of real shoes?
Me: Yep, first ones.
SL: Is he walking yet?
Me: Nope.
SL: Is he cruising then, like along the couches?
Me: Nope.
SL: Standing?
Me: Nope.
SL: Probably gets into enough trouble crawling around, eh?
Me: Nope. He doesn't move his legs. He uses a standing frame to stand up and he needs some shoes to wear in that.
SL: Oh, okay. We get lots of kids in here who use standing frames. You'll want something like this... (selects perfect shoes for King on the first try and fully explains the benefits of why)

Alright, I was going off the first experience where the lady had no idea what SB was. Turns out when I later said he had SB, the lady did know what it was and asked if I found out in utero and stuff like that. It was a high end shoe store recommended by King's PT and I guess they get a lot of special needs kids coming in for shoes. Lesson Three: I'm not the only one in this bubble after all.

Number 4, doctors office

Other Mom (to her mom in a loud voice while sitting right beside me): Aw, look how cute he is.
Grandma: Yeah, he's really cute!
OM: He's probably older than (her kid), don't you think?
GM: Oh, yeah, he's probably at least one.
OM: OHHHHH!! Look at his FOOT! Poor baby. Oh, poor baby! That looks like it hurts!
[Kingsley is wearing his splint on his right foot]
GM: Aw, poor guy! Oh, that does look like it hurts!
OM: Oh, I hope it doesn't hurt too much. I wonder what happened. Is he okay? What's wrong with him? Does it hurt him? [directed at me]
Me: Uh, nope. He's not hurt. Doesn't hurt him at all. It just keeps his foot in the right position.
OM: Oh. Oh. Well, that's good.
GM: Aw, poor guy.

I just didn't feel like having The Talk with these people. I could tell it would go down the same overly sympathetic route that would leave me either laughing inappropriately or asking them what was wrong with their kid (which would've been snarky since I heard them say why he was there and it was pretty mundane). Lesson Four: people are going to assume Kingsley is suffering and will say stupid things. I need to just not let this bother me.

Now that I've had these ever-so-enlightening experiences, I should really start coming up with some simple answers to have in my back pocket. Or I'll just fumble through the next couple of years and then teach him to answer for himself as soon as he can string a sentence together ;) Save me from myself!
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