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.

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 ;)



Tuesday, October 15, 2013

Surgery Number Five

It happened. We survived.

As you can imagine, I hardly slept last night. Add to that the alarm clock set for 4:30am and you can imagine how much caffeine was required to get through the day. I was so consumed with all of the dreadful thoughts you just are not supposed to think about when facing a situation like today. 

The prep we had done with Kingsley this past week and the hospital tour made such a difference for him! He was calm, he understood what was happening, he completely let it all happen. 


When it was time to take him back, he was calm. He explored the OR a bit and then easily let the Dr put the mask on his face. I talked to him, held his hands and without the slightest quivering lip, he drifted off to sleep. So brave, so very brave. 

Surgery took only about 90 minutes. His surgeon was very pleased with how much she was able to stretch his hamstrings. She had ended up doing both ankles once she had a good look at them in the OR. This actually works out in his favour because with both feet evenly casted he can bear weight go in his stander! She also only saw the need to cast him from the knee down and then wrapped zimmer splints over his whole legs. 

He woke up in recovery like a true champ. Not a tear, barely a cry until he saw me and wanted hugs. 


He was a little groggy. We sat him up and showed him his legs. His response was that he would like us to take off those new shoes please, he didn't want them on. 


He then turned his head to me and in his raspy-newly-extubated voice said: "Mommy, I wuv you. You're my best fwend." Aw!! Who cares if he was a little stoned, it was the highlight of my day. ;) 

It took them nearly 3 hours to get us a bed on the kids floor, so we just hung out in recovery for a long, long time. He did great. He ate Popsicles, played on his iPod and snuggled. 

This afternoon, he acted as though nothing at all had happened. The personal TV in his room was a little bit of heaven for him, so the TV coma definitely helped to keep him happy. He also wooed his nurses into showering him with juice, cheese, and pizza. It's tough work being so darn cute. 


His legs are completely hidden from me. The incisions are small and better left alone to heal, so we are not to touch his splints at all. Next Monday his surgeon will take them off and recast him into lighter, straighter casts. For now, they weigh a ton and are about as wide around as my thigh. Craziness. 


Tomorrow, we should be seeing someone about a wheelchair and a means of driving him home. Then we will be discharged, so long as nothing happens tonight. For now, I'm just thankful that part is over. Time to recover. 

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, October 10, 2013

... And Then My Head Exploded

I wasn't exaggerating when I said our lives revolve around poop these days. It still does. Since meeting with the general surgeon a couple of weeks ago, I have also met with the GI again, Kingsley's paediatrician, and today King's urologist. It's been great, and by 'great' I really mean mind-bogglingly ridiculous. 

Here is a breakdown of what we are discussing:

GI: do a cecostomy and do it now. Stop messing around and cut to the end where this happens either way. No MACE, MACE is bad. Maybe a mitrofanoff. 

Surgeon: no cecostomy, there are too many risks. MACE would be better, but try enemas for now. 

GI: what?? The risks are minor. Don't do enemas, that's a waste. Try senna for now [sidebar: worst advice ever. That was an ugly, ugly week]. 

Paediatrician: Cripes. I can send you for a third opinion, where would you like to go, who do you want to see? Are things better in Toronto? [another sidebar: is there anything better than a dr that admits this isn't their specialty and refers to experts whenever you ask? No. There isn't <3]

Urologist: cecostomy? Never. He needs a MACE and I will do it. And maybe the mitrofanoff, we will see, but likely [insert awkward moment of him trying to explain why, LOL!!] And yes, do the enemas now. But get a MACE soon. 

Which is about the time my head exploded. What do we do? Whose opinion do we trust? I have no idea. At this point, we are going to hang out with PEG until after the casts (that he gets Tuesday) come off. Then we will try enemas. Then we will start talking about a timeline for the MACE and investigate the mitro further. There is some security in knowing that this is somewhat status quo in the SB world. 

Good grief. Kind of makes me want to punch myself for ever whining about potty training Rach and Cor. If only a sticker chart and Strawberry Shortcake underpants could solve these problems! 


(not that you shouldn't whine about how awful potty training typical kids is. It really is horrid. Worst 2 months ever. Kind of. Well, whatever, it sucks, I remember.) 

Monday, October 7, 2013

Rockstar Milestones

Kingsley has hit another milestone. This one is so... strange. New-normal-strange. 

He moves his legs. With his hands. 

It's a pretty big milestone, if you think about it. He's going to have to move his legs around to get dressed on his own, transfer himself from his chair to wherever, and I don't even know what else. 

It's been so strange watching him come to this realization. The first time I saw it was when he was sitting and he had moved, which traps one leg underneath him - he leaned back and then pushed his foot forward with his hand to get back into a crossed-legged position. Prior to this, I had always had to adjust his legs for him. The next thing I noticed was in the van, in his carseat. Apparently he has a preference for how his legs dangle, so he moved them. 


Before now, his legs have just been there. He touches them, he knows what they are and that they're his, he'll move what he can if you tell him to, but that's about it. Now, he'll lay on his back, lift from the hips and ask me to help him pull his legs up with his hands, tucking his knees to his chest. 

Something so simple. I'm guessing there are a whole bunch of these milestones that he will hit that I'm completely oblivious to right now. I can't think of what they would be, but he will. 


That's pretty freakin cool. 

Wednesday, October 2, 2013

Talking to YOUR Kids

The little boy peeked around his mom's leg with wide eyes.
"Mom, what happened to him?" he whispered.
She looked over at us with equally wide eyes and quickly shushed her son.
"But, why is he in that?" he persisted.
"You can't ask that," she hissed, as she pushed him behind her leg again and continued to watch the show.
The boy peered out again and I caught his eye this time, as his mom looked over at me and made an embarrassed gesture.
"It's okay," I assured her, then crouched down beside Kingsley so that I was eye level with both boys, "He was born this way."
"Do his legs work?"
"Nope, that's why he has a wheelchair."
"Can he feel them?"
"Nope. It's kind of like if your foot fell asleep and you couldn't feel it."
He smiled up at his mom and then turned back to watch the show. Kingsley continued watching, oblivious to the conversation.

~

"That's Rachel's brother!"
"Ask her! Ask her!"
"Rachel! Why does your brother have a wheelchair? Hey, Rachel! What happened to your brother? Rachel!"
Rachel chatted on with her girlfriends, oblivious to the small group of boys behind her, pointing to Kingsley. At the same moment, two of them glanced up and saw me watching them. Their mouths snapped shut, but their eyes were wavering between curiosity and guilt. One bravely stammered: "Did he get hurt?"
"No, this is just how he was born."
"Do his legs hurt?"
"Not at all."
"Oh," they looked at each other and one shrugged before they turned away and carried on with their First Day of School reunions.

~

"How old is he?"
The little boy was standing with me just behind Kingsley, watching as he giggled and tapped the soccer players on the computer screen.
"He's three."
"That's like me!" he said delightedly, "E'cept I'm four."
I nodded, smiling.
"Can he stand up?"
"No."
"Can his legs work at all?"
"No, not really."
The boy thought for a second, then asked with a horrified expression, "But how does he PEE??"
I sat back on my heels, for once stunned by a child's question and unsure how to answer. Who was this kid and what in the world made him know to ask that? "Um... just like you..."
"E'cept sitting down?"
OH. Right.
"Yeah."
He slid in next to Kingsley and they kept playing together until it was time for us to leave.

~

The girls eyes followed us as we entered the room and sat down. Their table was not far away from us, so I heard as she turned to her mom and asked, "Mom... why can't he walk? Why is that boy in a wheelchair?"
Her mom glanced up casually at us and looked at Kingsley wheeling along behind his sisters.
"Well, some kids are just born that way. Their body can't tell their legs to move," she watched a second longer and then added, "His wheels light up, did you see that? Pretty cool."
As her daughter turned back to her ice cream, the woman glanced up at me, as if to gauge my reaction.  I smiled and gave a small nod.


Kids ask me about Kingsley all the time. Kids are naturally curious about the people and things around them. I am sure that adults are equally curious, but we have been taught to squash the urge to ask (or if that hasn't happened, we have a tendency to ask in incredibly awkward ways).

Kingsley is three. His speech is not entirely clear, when he chooses to acknowledge strangers at all. He doesn't respond or appear to care when people ask questions about him, so for now it's up to me to field the questions and I don't mind at all. I don't know if King will want to answer these questions or if he'll one day wish everyone would just shut up and leave him alone. Because of this, I feel a little bit inadequate as to what the universal 'right' way to deal with inquisitive children/people, but in my experience, most parents of children with a disability or adults with a disability would prefer you let your children ask, respectfully, and answer them as frankly and calmly as you can.

Here are a couple great tips on talking to your children about disabilities:
http://www.huffingtonpost.com/2013/08/02/disability-awareness-parents-teach-kids_n_3696279.html
http://crippledgirl.com/2011/03/tips-for-talking-to-your-kids-about-disabilities/

There was also an episode of Daniel Tiger's Neighborhood this past week that addressed a lot of the common questions I get about Kingsley when he makes friends with a girl who uses leg braces and crutches. It would make a great ice breaker for kids to get talking about disabilities: http://www.youtube.com/watch?v=jqjBSulEqYU


It's important to talk to them. To break down the fears of disabilities, differences, diagnoses, and equipment, we have to let children know that they're all okay. Wheelchairs are a wonderful thing. Communication aids are phenomenal. Hearing aids are fantastic. Feeding tubes are divine. They aren't scary, they aren't contagious, they just let kids be kids.


I talk to Rachel and Cordelia (and Kingsley) about differences and disabilities all the time. We recently read a couple of books about kids who use wheelchairs who are bullied (WHY OH WHY are all 'wheelchair' books about this?) because the other kids think they're different. They were flabbergasted. They literally could not understand why these fictitious kids could not see past the wheelchair and realize that the wheeler was just a normal kid. I love them for that and I so desperately wish that other kids felt the same way.


Wednesday, September 25, 2013

I Changed My Mind

This is another one of those posts where I use big words and talk about that stuff no one likes to talk (or read) about. So... Last warning here...

3...

2...

1...

Alright, well after complaining to an innocent neuro resident who asked the wrong question when I was a bit grouchy, I ended up getting a referral and appointment with the surgeon who would do Kingsley's cecostomy. I met with the surgeon yesterday. She examined Kingsley. She answered all my question. She asked the right history questions. These finer details really seem like obvious things, don't they? *sigh* 

It was a great consultation and in the end, I decided Kingsley is not going to be getting a cecostomy, at least not now. Some of the things that changed my mind are:

1. Proximity to the shunt line. King's shunt tubing ends very close to where the cecostomy would be. This could potentially cause contamination issues, at least while healing. An option would be to move the shunt line, but I absolutely hate the thought of touching the shunt and jinxing the perfect 3 years, 8 months and 1 week we've had with it so far. Don't mess with magic. 

2. You 'can't' have a cecostomy and a mitrofanoff. Whether it's truly anatomically impossible or just flat out difficult, I wasn't clear. She drew pictures. Anatomy is not my forte. Regardless, this seems to explain why people pair the mitro and MACE. At this point, we don't imagine Kinger will have a mitro, but I'm not ready to rule it out as an option before he's managing his needs on his own and we get a better idea of what is/not possible. 

3. Enema's. Finally. Finally, I had someone equally mistified by everyone's avoidance of the topic. She saw no reason why they wouldn't work for King and said that the very reason he couldn't be treated as a typical GI kid was the same reason these could be good for him... Something everywhere else in the world has figured out except our area, apparently. I wanted to give these a try before surgical options, but was given blank stares and brush-offs at every turn. Now, I'm going to do it! YouTube, here I come! (That sounds terrifying, doesn't it? LOL!) 

 She also wants to rule out one thing (with a long name I've forgotten) before persuing surgical options, so she's going to do a wee biopsy while he's under for his ortho surgery next month. We will have that knowledge in case we change our minds back. 

That's it. We have a follow up with the GI on Monday and then the new adventure will begin. Wish me luck! 

Sunday, September 22, 2013

Six Questions

I was tagged by Mary Evelyn over at What Do You Do Dear, which means that I have no choice but to answer six questions about myself, because her and her little boy Simeon are so cute and I would hate to see them cry. No one wants to be the reason a little boy is crying. And Cassie did it, so that means all the cool kids are involved. [insert sheep noises]

Here are my six.

1. Is this how you imagined your life would be?

Yes, exactly. Only in the sense that I never really imagined what life would be. Thinking too far ahead gives me anxiety, so I had vague plans about having a partner (but no dream wedding plans whatsoever), I definitely wanted kids, and assumed I'd be brilliantly educated and working with children with special needs of some kind. So, check, check, check, and check. Yep, livin' the dream! ;)


2. What's your drink of choice when out with girlfriends?

I almost feel like I should act like this doesn't happen that often, but... I do really like white wine. Pinot is my preference, but I won't turn down a gross bar white. I prefer to think of it as not being pretentious. I also like Pomtini's. And Palm Bay's.

3. What hobbies do you have that you don't mention in your blog?

This is dreadfully boring, which is probably why I don't mention it in my blog. I like to read, but I go in spurts with it. I love yoga, but sadly don't do enough of it. I took up running, then soccer which ended both my running and my soccer days. Now I've gone back to swimming, which I haven't done in about 15 years but turns out I'm still pretty good at. I also spend a lot of time online reading blogs, research articles (aka Facebook links), and self improvement websites (aka Pinterest). There is also the occasional Mensa-level, brain challenge (aka Candy Crush).

4. Name one thing about yourself that has surprised you.

I don't have control over my facial expressions. If I'm not making eye contact with you it's because I'm thinking something I don't want you to know and so I'm hiding it. This was awful when I was working and was something I would constantly be working on. Dead pan, non-judgmental expressions are hard. Shock. Horror. Amusement. Anger. Disbelief. Confusion. I used to think I was good at this, but turns out I'm not. At least I know now and can try to hide it.

5. How did your blog come about?

OK, so total giveaway question. When I was pregnant with Kingsley we read a lot of blogs and Jeff told me I should start one also. I didn't actually start four years ago, I started after he was born and then back dated stuff I had written in other places. Scandalous.

6. If money were no issue, I'd purchase...

Holy blaze, there's a lot of things I would purchase. I'd do that third-wish-for-more-wishes thing and purchase a huge, jackpot-winning lottery ticket. But if money were no issue, perhaps I would have already won the lotto and this would be overkill. Is it wrong to say a Cure? I'm not sure what for though. Can you purchase a long and happy life for yourself and your family? That's what I'd buy.

OK, now it's your turn. I'm supposed to tag people and taunt them with threats to continue the trend, so Kristin, Amanda, Laura, you're up!

Sunday, September 15, 2013

If I Had Known

If I had known what life was going to be like right now, four years after we were told about Kingsley's diagnosis, I wonder if I would have reacted differently. Would I have gotten so upset if I knew how much he would laugh? If I had known how little his sisters would care about any of it, would I have worried so much? If I had known about the surgeries and the wheelchair, would it have made me feel worse? Maybe the way he loves to snuggle and his incredible independence would have negated some of the ache.

Jeff said today that this wasn't the kind of anniversary he remembered. I told him it's not the kind of anniversary I can forget.


But if I had known about how strong he hugs;

about how sweet his breath still smells, even though he's not a baby anymore;

about how funny he thinks he is;

about how much attitude he can give you when he's mad;

about how sweet his little voice is;

about how much he loves being read to;

about how much he loves trains and buses and trucks;

about how deep his belly laugh is;

about how he knows everything a 3 year old is supposed to know;

about how our life is still pretty awesome;

about how much we don't care about his wheelchair or any of it.


If we had known how much we would love him, anyway, in spite of it, because of it, regardless of it, not thinking about it, not caring about it, when we're immersed in it, when we don't even think about it... I think it would have been easier. It was easy to look at those doctors and tell them we didn't care, to walk out of there, to not look back. It was not easy to keep breathing after that. Had I known, it would've been.

Sunday, September 8, 2013

The Bog

In my search to find places I can take all three kids to hang out, my friend recommended the Sifton Bog. I've been there exactly once in my life and it was with a client way pre-kids. I had completely forgotten about this little gem!

It was a nice, sunny day today and we had nothing to do, so I dragged the kids into the van and off we went. Let me tell you, it was a hard sell. When I explained it, Rachel and Cordelia kept repeating: "But that's it?? Just walking? Nothing else? But what else do we do there? That's it?..." and on and on.

The Bog is basically just a boardwalk. It starts with a stretch of gravel, which was well groved and impossible for King to push himself along. Short trip, then it was wood planks.



It's nice, even planks, very easy for Kingsley to go down. The only trouble was that it dropped off on either side, as in - one wrong wheel and King would've face planted down a foot or so into the dirt and trees. I didn't worry about the girls, but Kingsley loves to watch his wheels light up when he goes very fast (his preferred speed) and that means he doesn't look where he's going. I just held his handle the whole walk and it was all fine.

The boardwalk leads to:


There were a bunch of tween-ish boys when we got there, which ended up being awesome. They had nets and were getting right in where they shouldn't have been (so glad I'm not their mother!) pulling out turtles, tadpoles, and frogs and attracting fish for my kids to watch.


All three were in heaven. We stayed on that dock for nearly an hour, just watching and exploring.


I didn't get any pictures of Kingsley because I either had a death grip on his wheelchair to make sure he didn't wheel himself over the edge or later crawl over the edge when he was lying on the dock, dangling over so he could play with the water.

I will admit, I am not a fan of all of natures creatures. They're all fine from a distance, so it took a lot of effort not to shudder and run away when these boys were running over with turtles and frogs to show Kingsley. At one point, two dragonflies landed on my shirt. I know, dragonflies are all cool and pretty and whatever, but seriously, it took all of my energy to force a smile and not scream as Rachel took this picture. She was thrilled. I was paralyzed with fear.

GET. OFF. ME.

All in all, a gold star trip. Thumbs up for the bog, we'll be back! (with bug repellent)

Saturday, September 7, 2013

The Little Fish

Jeff and I met as lifeguards, have I mentioned that? We both grew up in water. I did swimming, he did diving and waterpolo. We both love being in the water and are completely comfortable there.

Rach is reenacting our lifeguarding days

Having a child who can't use his lower body stumped me. How in the world would he fit in our family? How would he go to swimming lessons? How would we take him to the beach? What in the world would he do in our backyard pool??


I started taking Kingsley swimming when he was a baby at our Centre which has a very, very warm little therapy pool. At the time we moved into this house last spring, I'd say Kinger was the most comfortable in the water of the three of them. He didn't panic when he was dunked (though he didn't like it either), he could float almost on his own on his back, and he really loved just hanging out in the water.


Through sheer exposure to water, the girls have magically learned to swim this summer. It's truly blown my mind. Rachel has gone from a timid floater to swimming in the deep end all day, every day. Cordelia isn't comfortable in the deep end yet, but she's gone from freaking out if her face got splashed to swimming underwater.


Kingsley is finding his way. He wears a puddle jumper in the water, which is a fabulous invention, in my opinion. In June, I had to be thisclose to him to make sure he didn't tip over and get a big mouthful of water. He didn't know what to do with his arms, couldn't stay level, and only went where we took him. I predicted the most boring summer in the world, having to stand in the shallow end keeping him from drowning while everyone else got to actually swim.

workin' on the chest muscles

Fortunately, I was totally wrong. King is a little fish! I don't even have to be near him, he just swims around using his arms. If his face goes in now, it's because he wanted it to (or because Jeff dunked him). He likes to hang out on the stairs and play with his trains (aka bath toys), take the dog for a walk (aka hang onto the tube for the automatic pool vacuum), do push ups on the lane rope, and ride on my back as I swim around. He's also good at jumping in (aka sitting on the edge and throwing himself into the pool).


I don't know what the future holds for him in the pool. I know there is a place I can access for 1:1 swimming lessons that I'm going to tap in to soon and see if they can teach him to swim without his legs. I'm confident that he'll find his way.
Related Posts with Thumbnails