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. 
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