Showing posts with label surgery recovery. Show all posts
Showing posts with label surgery recovery. Show all posts

Monday, January 13, 2014

It's A Big Deal

A couple of months ago I was out at Target with Kingsley and being unfamiliar with the store, we wound up in the underwear aisle. Kingsley, naturally, started screaming and cheering the fact that there was Thomas the Train... underwear. My heart squeezed. I turned him quickly and got out of that aisle. Fast.

Underwear is like the Holy Grail in our world. Social continence - the ability to stay clean all day long, though with non-traditional methods - is a huge quest. The very very bottom of the spinal cord is the part that controls continence, so nearly everyone living with SB has to work to achieve social continence in some form or another.

I have probably said far too much about our quest for social continence ;) It has been a battle for about a year and a half now.  I have been googling and googling and emailing and messaging and reading and consulting and trying and trying and trying again.

And then this weekend, Kingsley wore underwear all day. And all day today.


All. Day. 


Do you know how long I've waited for this day? It was pretty darn exciting. 

I kind of feel a teenie bit like we are cheating on the underwear thing. While our #2 issues have been completely, totally resolved (ALLELUIA!!!), the brand new #1 issue is still there. I can't figure it out, but as the timing was exactly when we figured out #2, it must be related. So, anyway, to address that business, I got Kinger what I call men's maxi pads. They're Gentlemen's Incontinence Pads, but let's be real - they're blue and shaped like a pear instead of an infinity loop. Whatever you want to call them, they are significantly cheaper than diapers. Although, it was more awkward buying them than when I stock up on KY (which is not a wink wink thing, it's for Kingsley and I do buy about 10 tubes at a time and get a lot of averted eyes by cashiers). 

So, with one of those guys hidden in Kinger's Toy Story unders justincase, he is good to go! 

He is still going to have to wear a diaper at night for the foreseeable future until we get that stuff worked out.  He doesn't actually care what he's wearing or even notice. I mean, other than the big underpants parties we had all weekend. ;) 


As thrilling as this is, it is not a permanent fix. The things we are doing now, the way we do them, Kingsley cannot be independent. It is different for every person, there are so many relevant factors - gender, leg/body functioning, age, continence issues... but we have come to the conclusion that for Kingsley to be both continent and independent, surgery is his best (and likely only) option. This has not been an easy decision, despite my previous thoughts on it. The procedure(s) we are investigating are far more invasive and scary than we first thought. The recovery will be long and unpleasant. The risk of complications are real. But, we have yet to find someone who regrets having the procedure done. The only regret we have heard is the regret that it wasn't done sooner, when they were younger. I don't know when we will be having it done, but the decision has been made. The next chapter will begin. 

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 ;)

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.  

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.

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:

Sunday, October 20, 2013


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 ;)

Friday, October 11, 2013

Counting Down

I love count downs. Count downs to holidays. Count downs to Christmas. Count downs on the radio. Turns out, though, I hate count downs to surgery.

Kingsley's surgeries so far have been like this:

#1, back repair
Doctor: Congratulations, it's a son. I'm going to prep him for surgery now.

#2, shunt
Doctor: Remember that shunt I said he'll likely need? He needs it. I'm going to prep him for surgery now.

#3, decompression
Nurse: the doctor just looked at the images. He needs surgery. You've got less than a week to get things organized.

#4, detethering
Nurse: the doctor just looked at the images. He  needs surgery. You've got less than a week to get things organized.

#5, tendon release
Doctor: when do you want it? Five months? OK, see you in October.

Five months is far too long to sit around thinking about the worst things that could happen and all the ways that this could go badly. The last month has been the worst. Between Kingsley's endless stream of doctors appointments regarding his bowel fun, there has been the consult for surgery, pre-admit appointments, a urodynamics (which he did like a boss), OT appointments, PT appointments, SLP consults, preschool discussions, and finally, a tour of the hospital to desensitize Kingsley to what was going to be happening. It's been a lot to take in and I'm just drained from it all. Spina bifida's impact on our lives ebbs and flows, and lately it's flowing over my head.

I think the hardest part of all of this has been not knowing what will happen after the surgery. Word on the street is that it could go one extreme way or the other: either he will carry on as normal, but with casts or our lives will go into a dead stop for 4-6 weeks while he has the casts on. His PT does not think we will be able to modify his wheelchair to accommodate casts and so will have to use a loaner from the centre which I haven't seen, but has been described as a beastly thing. If he can't get around in the wheelchair, can't crawl, can't sit unsupported, and can't go in his stander, the poor kid will be immobile. We have requested a scooter board be made for him, but it's not ready yet. Another huge issue is how he's going to fit in a carseat and where his legs will go while he's in one. It's another thing we won't be able to work out until he has the casts on him. And of course, how heavy are these casts going to be??  Even if I get him in a carseat, will this modified wheelchair fit in our van without breaking my back?

I am looking forward to this being over. Not only because I'm beginning to dread the casts, but because I'm excited for when the casts are off and he is able to do more. I can barely get his AFO on his one foot now and hate putting him in his stander because I can't get his legs straight enough and I'm constantly worrying if I'm doing more harm than good.

And so, we count down the last few free days before surgery. It's a nice long 4-day weekend that we have to visit with family and just hang out. Tomorrow, we are going to a wedding, Sunday is Thanksgiving, and Monday we will spend just enjoying our time together. Tuesday at 8am, his surgery begins. Counting down...

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.

Thursday, April 7, 2011


I made a PG video of his legs moving! It's sideways, but you can still see what he's doing and hear my annoying excited voice. At the end, you can see how he reaches down to touch his leg when it's moving (at the top).

I've watched this video about a hundred time. It's strange. I can't even describe what it's like to go from him moving his legs so much a year ago, to a lot less, to not at all. And then to get so much back after his decompression and then have that go. And then to have the detethering and now be back here. I had just accepted that this movement was not going to happen at all and now he's moving. I know it's not a lot (well. sort of.) and I know that it doesn't mean he'll walk one day, but it's still amazing. And scary.

Friday, April 1, 2011

The Food Issue

When Rachel was a baby and I was on maternity leave I had a lot of time to read and watch things on TV.  Somehow, I stumbled upon An Inconvenient Truth and Fast Food Nation about the same time that Rachel started solids. I've aways been a fairly healthy eater and been environmentally aware, but these two sort of pushed me over the edge for awhile. Our house became much greener, our diet much cleaner.  There have been a few lapses (most notably my incredibly unhealthy obsession - yes obsession - with microwave macaroni and cheese while pregnant with Kingsley) and pregnancy/working is usually a disaster, but for the most part we've been moving into a healthier, better lifestyle.

Kingsley's bowel and bladder issues have further pushed me to a cleaner way of eating. We are not entirely sure what his bowel situation is, but diet is a big part of keeping things moving so his diet will need to be healthy! I decided when he was born that now is the time to get us all on track and finally clear the house of the things that Kingsley (and us!) shouldn't be eating anyway so that when he starts eating our diet will be all good stuff.

Then Kingsley started eating.

Or, didn't start eating, I should say.

As with the girls, I made bags and bags of food for King. Our freezer was stocked - rainbows of local, seasonal goodness.  Kingsley showed some of the signs of readiness and then... nothing. He had no interest. Months passed. No interest. Small bites. I became desperate. I bought jarred food - the mixed meat/vegetable kinds because he wouldn't take any finger foods and I draw the line at making pureed meat (did that with Rachel - Oh Maude, that was disgusting) and he ate a bit. One night after Christmas I sent Jeff out for a couple jars of food and he came home with pureed 'casseroles'.  Repulsive. They smell like dog food and taste about as good, I assume. Kingsley ate them! He ate them all!

How did we end up here? Well, I think it is a combination of things. For one, that pesky Chiari business gave Kingsley a wicked gag reflex. Since he was a wee baby, he's never tolerated things in his mouth. Soothers, bottle nipples, medicine syringes, fingers - if they passed his lips, his stomach would empty. He just never mouthed things. He skipped over that whole developmental milestone. I find it both incredibly cool and incredibly frustrating how human's grow and learn to do things as babies and how missing a step can just topple the whole order of things.

After his decompression, I realized that his gag reflex was no longer as strong. That's about when Jeff brought home those gross jars. It was a breakthrough. He would EAT! I was ready to go full steam ahead and start addressing this food thing. Then he had surgery again and was on his stomach for three weeks. Set back. Then he got the flu. Then he got a UTI.

And so here I found myself. As of his 14 month birthday, Kingsley would eat 5 pureed casserole-type varieties of jarred food and nothing else. Even worse - they are five very specific types of food. I have tried different brands, the organic version of the exact same brand - no way.  I KNOW jarred food is not pureed McDonald's. I know this. And yet, it feels like a huge mom fail to be *here* after spending the last five years moving away from things like this. I buy 25-45 jars of babyfood in a single grocery trip. That feels weird. It feels wrong. I feel like people are looking at me funny. Especially when he's with me and they see how old he is. A couple of weeks ago, while ringing in my 40 jars, a cashier whispered: "Don't you make your own?" and then I had to stand there politely smiling as she told me all about one of her granddaughters who was a picky eater, too. Not.The.Same.Thing.

A couple of weeks ago I was talking with Kingsley's OT about feeding him and what to start trying. She listed off foods and I'm sure my face showed how badly I was cringing inside. Processed. Processed. Sugar. Preservatives. Additives. She reminded me that the goal is not nutrition. The goal is to teach him HOW to eat.


Teach him how to eat.

And so, that is what we're doing. And the last two weeks have been incredible! It's slow going, but day after day, Kingsley is learning to eat. I am ridiculous - nothing he is eating is horrendous, but I still cringe when I'm shopping for him. It is not doing his digestive system any favours, but things are okay.

Since mid-March, he drinks milk from his sippy cup all by himself. He loves milk. He drinks enough of it that I can now put his PEG into his milk and know that it'll get in him. He eats minigo's - not plain yogurt with actual fruit, just minigo's.  He even gets excited when I pull one out of the fridge. He eats oat cereal and as of yesterday I can mix fruit in it and as long as it's not too obvious, he'll eat it. He can eat an entire Gerber puff without having to have it broken into 5 pieces. Today, he even picked one up and put it in his mouth all by himself. He will pick up and take a bite of a veggie stick (a cross between a french fry and a potato chip) and eat it.                                            


I have a list of things to attack next. I'm most excited about getting him to drink water so that he can drink THAT instead of waking me up in the middle of the night when he's thirsty. Oh, I can dream...

On a related note - yesterday, he put a toy in his mouth for the first time and laughed like it was the funniest thing ever. Today, he mouthed his socks and then put my phone in his mouth. He tried to bite my nose. He seems thrilled with this new skill of putting things in his mouth and I LOVE IT.

In two short weeks, how far he's come absolutely blows my mind.  He still throws up every other day or so and every meal involves a decent amount of gagging, but he is learning how to eat.

And when he gets there, I will have plenty of organically grown, homemade, whole food meals ready for him ;)

Friday, February 18, 2011

Spring Forward

When Kingsley was in the hospital, we were sent a huge planter with daffodils in it. A couple of days ago, I came downstairs to find...

Tulips! Who knew? All along, I had the tulips in my house. Can't escape Holland if I tried. ;)

Kingsley is doing well. He's recovering nicely and I am counting the days until we can just pick him up and go. The last few days have been long, attempting to keep him occupied on his tummy is exhausting!  However, it's a small thing to be whining about when he's doing so amazing otherwise.

His OT arrived with the scooter boards! She brought two different ones, one was a banana looking thing and the other was a padded square with wheels. The padded square did not go over well with him. It raises him up pretty high off the ground and then his arms dangle up in front and he has to keep his head up all on his own, like cobra with no hands. The banana thing however ended up being kind of cool. It allows his arms to move freely and he can put his chin down if he wants. 

He went on it alright, but then promptly decided that he did not enjoy it. He even figured out how to roll off of it, sneaky kid. I tried it again the next day and it was much better! He moves backward, but it's a start. He's got the hang of pushing himself. He went down the hall all by himself.

 Hi Mom, yeah, this might be alright... No! I can't take it! Get me off!!

Baby steps. He'll get used to it! We're trying to keep him occupied while on it and give him reasons to want to be on it. Soon enough, he'll get there. In the meantime, Rachel and Cordelia are loving the scooters.

They're blurry because they're action shots. The spinning is great. ;)

His PT came on Thursday, but no castor cart. She found a great one, but when she was signing it out she discovered the tires were flat. We're going to get it on Tuesday when we go into the centre to get the stander fitted.

Two more fabulous Kingsley things! The first (which I figure if I say it enough I will go beyond jinxing myself ) is that Kingsley slept through the night last night FOR THE FIRST TIME!! *heaven* It was fantastic. He woke up a bit early for my liking (a half hour before my alarm), but I forgave him for that. ;) Since he's come home from the hospital his sleep has gotten better and better. Thank goodness! Rachel started sleeping through at 10 months and I think Cordelia was about 12-13 months (I know I was back at work), so I'm not exactly surprised by this, but it still has been a long 13 months - 17 really when you tack on those 4 sleepless nights of my pregnancy.

The second is also bed related. Kingsley has to sleep on his tummy right now.  I have to sort of barricade him with blankets so that he doesn't roll over. I tuck them along his side, under his armpits.  Three times I've come in the room to find him moved! He's usually pretty darn pleased with himself as well, like he knows he's done something cool. Today, he got up far enough that he was able to roll over. He has to be pretty quick about doing it as well since I hear him wake up and I'm in there within a couple of minutes.  I wish I could see him doing it to see how he's doing it. I've been trying desperately to recreate it on the carpet, but nothing entices him.

The purple pillow there and his giraffe are out of his reach usually and his armpits are level with the top of the folded blankets. 

That's it for my King. Things are good. I like it. Spring is coming. :)

Tuesday, February 15, 2011

One Step Forward...

Things are going well here. We're almost done our second week post op which means one more until all activities can return to normal. It hasn't been too bad, although I do feel cabin fever setting in.

Yesterday we had clinic and I think it was our best yet! ...although that's not saying a lot based on previous visits. ;)  Good nonetheless. We were there to see Ortho for the first time (I know. Yes. The first time. See comment re: clinic visits).  While there we ended up seeing just about everyone. It was a big Valentine's clinic party! There were a lot of other people there, which hasn't happened before. It's going to sound odd, but this was probably the first time I've been around older kids with SB since finding out about King's diagnosis. I wish I could have lingered.

First up was a quick visit with his NS nurse to look over his incision. It's freaking me out. I had a huge panic the day after we came home from the hospital thinking that it was leaking and swelling. I was almost in tears at the thought of having to go right back to the hospital. Add to that some cathing trouble and yeah, that was not a fun day! BUT thanks to technology, I just emailed a picture to his nurse and was reassured that things looked alright. It also looks odd because most of it is a previous scar that has been reopened and resewn. It's a bit bumpy. It's all normal though and healing well. Phew. One more week of keeping him on his tummy, airing out his back, and doing sponge baths. We checked in with our social worker and his continence nurse (assured her that things were all back to normal and working just fine!), then saw one of his PT's before the ortho resident and finally the ortho (everything is fine).

It was one of those rare visits where they asked questions (no one mentioned folic acid! Woo-hoo! ;)) and I was really excited to give the answers to them. I didn't leave there feeling heavy about the conversation we had.  They asked how his development was other than the obvious and every area was right where it should be.  His fine motor is going well, his interest in toys and playing is expanding, his eating is getting better and he's actually getting close to sleeping through the night (QUICK! Knock on wood!). He's also picking up language, which is awesome. He understands "clap your hands," "give me five," "hi/bye" (he waves), "no" (shakes his head), responds to his name, and is starting to sign 'more' and 'all done'. He's also pretty clear when he calls for MAMA versus just crying and yelling NO NIGH' NIGH'! when you head up the stairs with him. He's a genius. ;)

Mastering the sippy

What's up with his movement though, right? It's frustrating. I feel like the poor guy takes one (metaphorical) step forward, then gets forced to take two back. He could sit up on his own, then lost it. Then got it back, then lost it (and now has to wait to work on it again). He was starting to move on his tummy, then lost it. He was so strong on his stomach pre-decompression, and now it's an area of weakness, though the forced tummy-time has helped this past couple of weeks. His poor legs have been all over the place. Movement for the first six months or so, then lost, then regained at the hip so suddenly and remarkably, then lost.

One awesome thing about clinic was the hope they gave us. I feel like we've been getting mixed messages as far as what to expect from this surgery. It's pretty clear that no one expects he'll regain all of the functioning he had as an infant. I can accept that. We've been told that with the detethering the goal is to come out the way you came in (as in, no accidental slips and snips of the cord) and that any improvement is gravy. So far, he's got what he went in with just fine. He also has a much stronger medial hamstring on the right side - the kick we saw post-surgery has come back now that we're at home. Since hamstrings are lower down on the spine, it is still confusing that he's showing no sign of quads. HOPEFULLY once he gets a break from recovering and regressing and gets a bit of time to progress and build up the muscles that he does have, we'll see something happening. Yesterday we were told that we have months to see the results of the surgery, which is what I wanted to hear. I don't need a guarantee, I just want some optimism.

My funny Valentine's. Come on. You knew they'd have outfits, right? ;)

And looking forward, we have some cool things about to happen. I mean, where's the fun in moving slow, right? So, in the next week Kingsley will be getting 3 new pieces of equipment to test out. The first is coming tomorrow with his OT: a scooter board. There's been a lot of talk about them and the pros and cons lately and I've decided to give it a go with him. It's essentially a skateboard that he lies on and uses his arms to move. I'm hoping it will encourage him to explore and realize that moving is a cool thing to do.  Hopefully, it will also get him to rebuild up that upper body strength. If he doesn't hate it, that is. Then, Thursday his PT is going to see about bringing out a caster cart which he may be a bit young for, but will also give him another way to get around the house and explore his environment. I think the girls will love it. Lastly, next Tuesday he is (finally!) getting fitted in a standing frame, which is more or less some bars and velcro which will hold him in a standing position. We've postponed this twice because of surgery. It will engage his legs in ways they haven't been before and hopefully strengthen whatever muscles he is able to strengthen. This also opens a whole new world to him as far as being in a position he's never been in. The world looks different when you're upright!

Well, there you go. A very hesitant step forward with a dash of hope. And one ridiculously cute Valentine, no?

Tuesday, February 8, 2011

Home Sweet Home

I LOVE being at home with all of my kids!! Oh, bliss. Well, near bliss.

The last few days have been long. Kingsley has not slept well in the hospital. He fights sleeping and loathes the crib like you would not believe. He misses the girls and cries a lot. Yesterday, we got a new roommate. She was a four year old who had her appendix removed. She would sleep a lot, then randomly wake up screaming. Usually just after I had gotten Kingsley to sleep. It was frustrating. He would get so excited when he heard her talking, then realize it wasn't Rachel and get sad again.

To keep him occupied (and quiet), we uncovered a wagon and did laps. Lots and lots of laps. Everyone on that floor knew Kingsley by the end of two days in the wagon.

The girls did come to visit again.

And then we did more laps.

His bandage was removed and I got a look at his scar for the first time. It is scary looking. It's a couple centimetres longer than it was before and a lot of the red skin that he had has been... I don't know actually! Sewn in maybe? It's not there anymore. Not as much anyway. It'll be a lot more subtle when it heals.

Today, after doing a few laps in the stroller, he got his discharge papers. Alleluia.

(notice his sleeper? thanks Kathy!! perfect for my rockstar)

Since we've been home, things have been up and down. It is hard to keep him lying down. There's not a lot he can play with. He's sick of his phone games, sick of the usual books, not interested in cartoons even! He's crying a lot. I can't wait until he can talk and just tell me what is going on. He's sleeping now, but refuses to stay on his tummy. He's figured out rolling again and flips over the second I leave him alone. He's not settling well. We went through this last time, where there was a few days of adjustment to being home again. My poor boy. The girls are very happy to have us home. Rachel decided that she was going to throw a party for us and decorated the whole playroom and I've promised Cordelia a morning of snuggling tomorrow, just the two of us while Rachel is at school and Kingsley naps. This hospital thing is just no fun for anyone.

Saturday, February 5, 2011


I still think this surgery (detethering) is far easier than the last (decompression).  Kingsley is doing fabulous. He is far more alert and 'himself' than he was 3 days post-op last time. I can't even begin to explain what an amazing boy he has been. He takes these huge events so well, as if it were just another day. As if it were normal to wake up and find yourself face down on a hospital crib unable to go anywhere, with a big bandage on your spine. That is my baby. He puts the Star in Rockstar.

Twenty-two hours after his surgery, he was moved from the PCCU (paediatric critical care unit) to the regular children's ward. I had mentioned after his decompression what a challenging time we had on the floor last time - packed ward rooms, lots of noise, lights, people, action. Poor Kingsley had such a hard time. Since then, a brand new wing of the hospital has opened up and all of the children have been moved. It is a DREAM on this floor! It's HUGE, absolutely monstrously huge. I love it. There's no more 'nursery' wing, it's all kids on one big floor. Because it is still cold/flu season, there are a lot of contagious kids and kids with more critical things than Kingsley right now, so he is in a semi-private room. His roommate is a 13 year old girl recovering from surgery for scoliosis. They are a strange pairing, but she's quiet and her family is lovely. It's been great.

We haven't seen a lot of movement in Kingsley's legs since the first day, but we are not discouraged. His spine has gone through a big ordeal and spinal shock is normal after this sort of surgery. I am very hopeful for what will happen once the swelling goes down and healing is complete. Anxious and impatient, of course. ;)

Thursday, Kingsley slept a lot. He was dopey and disoriented. He kept pushing up on his hands to look around and see what was going on. It freaked me out and I spent a lot of time trying to coax him into lying back down.

Friday, we started to get small smiles from him. Just little ones. He was still pretty quiet and sleepy.

He refuses to look to the right for the most part. He's always had this preference for looking to the left, since he was born really.  We had to work on it when he was a newborn, again after the decompression and it seems once again we will have to work on it when he gets home. For now, he looks to the left and as a result has a very puffy right eye. 

He misses his sisters. The first smile I got out of him was when I showed him a picture of Rachel. He just pats the pictures all day and then will hand them to me as if he's saying, "Hey Mom, bring me her, okay?"

Then his wish came true and the girls came for a visit! The GRIN on his face was unreal - ear to ear, he pushed right up and just kept reaching out to touch them with the most happy face you could imagine. It was priceless. The girls were equally pleased to see him and give him kisses and comfort him.  Lovefest all around.

Unfortunately, it is a bit hard to occupy a 12 month old who has to stay on his belly all day. My iPhone is the best thing ever. I can let him scroll through the pictures of the kids, watch videos of them, and play his favourite games. His top two, in case you were interested ;) are Peek a Boo Barn and Duck Duck Moose's Wheels on the Bus (we have it voiced over with Rachel singing and he recognizes her voice).

This morning, I was greeted with this:

All smiles and all for me! There's my little man. :) Today was fairly uneventful. His incision is clean, dry and healing well.  No leaking or problems at all. He is allowed to roll onto his side or back while awake, but still has to sleep and spend most of his time on his tummy. There's no word on when he'll be released.

One other fun thing about this hospital stay is that Kingsley keeps getting brought meals. I know this is going to sound odd, but I love hospital food, so I was pretty excited when the trays began arriving. It's nothing elaborate - mostly soup and jello and stuff, but since Kingsley doesn't actually eat any of that or drink ginger ale (really, who makes these menu's??), I've been getting a lot of regular snacks. Today, he was brought ice cream twice! Score! The second time, I thought I'd at least offer him some, expecting a refusal when low and behold - he loved it!

You're probably thinking 'love' is a bit of an overstatement based on those faces, but for Kinger voluntarily opening his mouth for anything is a big deal and he was all over this stuff. Maybe he is my kid after all ;)

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