Showing posts with label development. Show all posts
Showing posts with label development. Show all posts

Sunday, January 5, 2014

Help Yourself

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

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

"Go get it yourself." 

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

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

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

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

My kid took off his own shirt. 

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

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

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

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

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


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/

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. 

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.

Monday, June 10, 2013

What's a Kid to Do?

The past year or so has been quite educational as far as what is accessible for children in our city. Kingsley has now had his wheelchair for 16 months and in that time I have been endlessly brainstorming about ways to keep him busy. Some places have been awesome. Some are total flops. There are so many things to do, places to go when you have children. So many places that you take for granted. You might notice how hard it is to maneuver a stroller through Gymboree, how inaccessible shopping is downtown, and even get irritated when the automatic door buttons are broken, but until you have an independently wheeling child, those annoyances suddenly become barriers in the most real sense.

Here is my run-down on the places in our 'hood that people hang out with kids:

1. Parks: there are designated parks in London that are meant to be more accessible and disability-friendly. It's a bunch of hooey. These parks usually include a play structure with a single ramp that Kingsley can roll up and hang out on a platform that then has steps up or down to get to the action. Sometimes there might be a bubble thing for him to look through. Wow. They also have dips in the concrete pathways that lead down to wood chips, I assume so that he can roll down into the wood chips? Brilliant. Unfortunately, the wood chips aren't usually topped up, so no matter where you're rolling into this section, you're dropping off a curb to get there. Into wood chips.

 yay! woodchips!!

wow! a ramp to stairs and a drop in the curb to roll on into those fun woodchips

There is usually a swing there that is for people with physical disabilities, in that it's a huge chair with a bars that come over your shoulders and connect between your legs, kind of like on a rollercoaster. They're adult sized. I read the fine print on the swing once, just trying to find out it's purpose as it is so big it fits two of my children at once. It says there are additional straps to support smaller people. The straps are not there.


There is ONE park we have found and - gloriously - it's the one closest to our new house! It has three whole ramps for King and each ramp leads to an actual activity, a piano, a finger maze, and I forget the other thing. Kingsley loves it. There are still wood chips, but (at least last summer) they were topped up to curb level and he loved to sit and play in them. It's a big playground with a lot of paths. It's not perfect, but it is somewhere that we can all go and have fun.


the school playground is also partially accessible

2. StoryBook Gardens: this is a big thing in our city and kids love it. I LOVED it when I was a kid, though it's changed a lot since then. When Kingsley was a baby, this was a great place to take the kids. Kingsley would nap, nurse, people watch, play in the huge sand pit, and have a great ol' time while the girls played. Now, not so much. The park itself is accessible and has lovely paths, but none of the structures, rides, or activities are wheelchair friendly. Kingsley is no longer content to sit and watch, so this place is out. Sadly.

3. Children's Museum: another huge thing for kids in our city and was when I was a kid as well. This place is accessible, has an elevator and ramps, activities at his level and that he can access, lots of fun. However, the museum has HUGE safety hazards in the form of big wide open stairwells on the upper levels. They are central stairs, right in the middle of the action and there is nothing to stop Kingsley from flying right down them or have another kid bump him in that direction. I am shuddering even typing that. There is also a big wide open stairwell down to a mermaid sand pit, where of course King loves to play. It gives me nightmares. It's on my to-do list to email them and tell them to put in some flippin posts at the top of the stairs, for Pete's sake. Until that happens (and I'm not holding my breath), we can't hang out there unless I'm one on one with King.

4. Indoor Playlands: there are basically three in this category - Adventures on Wonderland, Kidscape, and McDonald's. McDonald's is pretty much the same everywhere and they aren't accessible, not even remotely. And it's McDonald's. Kidscape and AOW have the same problem, being that they aren't accessible. They are big places with different spaces within them, lots of kids running here, there, and everywhere, back and forth. He can get in. He can sit and watch. As a baby, there were big mat areas where he could play, but that got old when the only thing I could do with him was PT exercises. Boring mommy ;)

5. Skating Arenas: they are accessible! We haven't been able to go this year, since my PT laughed at me when I asked if I could skate with a torn ACL, but last year we went and King had his borrowed sledge and did great. I have heard that you can even borrow sledges if you call ahead, but I don't know if that's true. The change rooms are just benches, like any skating place, I suppose. I'm not sure I've ever seen a change table, nevermind an accessible change table. We don't hang out long though, so have never needed one.

6. City Swimming Pools: they're kinda iffy. I mean, they are accessible, but not overly. A couple of them have lifts or ramps, but the city-run pools don't really have accessible change tables or spaces to change King other than a bench. It's fine now, at this age and with his abilities, but I know others have had issues with this. It's part of why we've put in a pool at our new house.

7. YMCA: oh, boy, I had high hopes for this place. ;) Fortunately, they have not let me down again! It's great. The change room is great, the pool has a ramp and a lift (though not to the shallow end, but this doesn't bother us right now). The gym, the playrooms, the activities for kids, and the whole place is very inclusive. Kingsley can go anywhere and do (almost) anything. They have a Treehouse room with a structure similar to the indoor playlands, but different in that there are things on ground level that King can wheel into/under. I've only gone to the one in the north end, but I hear the other Y's are also good.

8. Libraries: I can't say enough about how much I love our public libraries. We've been to a handful now, and not one has disappointed us. They all have train tables, books (obviously!), computers, tables at Kingsley's height, toys, floor space to sit and hang out... they're just awesome. We go weekly, sometimes more, all year round. All three kids love them. I love them. We love them. Except the family bathroom in the Westmount one has a hugely heavy door that does not have a button to open it. It's ridiculous. But other than that, love. ;)


9. Movies: Jeff and I have always been drive-in people. We used to drive his half-dead car with the dead stereo to the outskirts of the city and listen to the movies on a beat up old ghettoblaster that ate batteries for breakfast. It was cheap and we could bring our own snacks. Anyway, it's also a great place to bring babies because you can roll up the window or strap them in a wrap and go for a walk if they started to cry. Now, the kids understand what 'adult movie - go to bed' means so we wait until the first movie is a family movie and pack up the kids. The location itself is not accessible, not the bathrooms (unless there's separate one I've never noticed?),  not the gravel paths, nor the playground. But, we can all go and hang out by the van and play, get comfy in chairs and make it work for now.


We took Kingsley to his first movie theatre a week ago! It was great and he did surprisingly well, quite surprisingly considering how big and loud the theatre is. The only issue is that the wheelchair spaces are all down in front and the good theatres are the really big ones which means you'd have to be looking up to watch the movie. Not my favourite place to sit. We parked his wheels and he sat on my lap, which is where he wanted to be anyway.

10. Other People's Houses: this is one that is starting to become a problem and I don't see that changing. He's outgrowing his Bumbobile. His little bum and skinny legs fit in the seat just fine, but it's low to the ground and at his age, kids start to stand up more. To be at the level of his peers/sisters, he prefers his wheelchair or stander. Unfortunately, people's homes are not generally designed to be accessible so his big wheels don't fit and kids don't stay put. They run upstairs to show you their room, run downstairs to grab more toys, want to play outside... And Kingsley is left there with me and the other mom. I am getting better at inviting people to our house to play, since it's pretty kid friendly and King can obviously get anywhere. Even going downstairs, other kids are very eager to wait for Kingsley since it means they get to ride the elevator. This is one hurdle that won't get any easier as he grows up, but I'm not dwelling on it yet. We will tackle it as it comes.

11. Bowling: this is one rare gem that we've stumbled upon. There's a cool place here called the Palasad where you can play arcade games, bowl, eat, and a bunch of other stuff. There was one right by our old house that underwent big renovations and one of the things they did was make it completely accessible! I took the kids to a birthday party there recently, full of anxiety, and as soon as I walked in the door a staff member appeared out of thin air asking if King was going to bowl and they had a ramp there before we even got to the alley. I haven't been to the other big bowling-fun place here, Fleetway, but I'm told they are connected with an organization for adults with disabilities and have made sure it's accessible for everyone.



That's about all that I've found. The malls are also all accessible, but Kingsley's not a huge fan of shopping without an ice cream bribe. Fortunately right now we are surrounded by construction, which is still endlessly entertaining for Kingsley. When we get really bored, we walk up the street to the end of the subdivision where they are preparing the next field for an apartment building. There are a lot of diggers and dump trucks, cement trucks, and cranes around here. The construction crews are so friendly to Kingsley, waving and honking their horns. He loves it.

If there are more places to go that I don't know about, let me know! It's going to be a long summer. :)

Thursday, February 21, 2013

Forgotten Milestone

I was having some delicious girl time with some dear friends on the weekend and one of my girlfriends was lamenting that her one year old still used a bottle and it occurred to me that I've kind of dropped the ball on a few skills with Kinger - like the fact that he doesn't use a cup at all, just sippy cups.

I don't actually care that he uses a sippy, I don't think I'm traumatizing him or that he'll drink his first beer out of a sippy cup or anything ;) It's simple and it doesn't spill and I can toss it in my purse and go, you know? It is also gross to clean milk and/or medicine out of a water bottle, much easier from a cup with a lid!

But, I figured I should introduce him to this wonderful thing called a Cup with No Lid.

He was thrilled. Thinks he's Mr All That with his little plastic cups at the dinner table (because I have no time to change his clothes after breakfast and lunch when he spills it down his chest).
I've also had a few reminders of how strange life can be with a kid who doesn't feel his legs when King dumped his milk in his lap and didn't notice at all. He just kept looking in his empty cup and asking where the milk went. You just gotta laugh.

Wednesday, February 20, 2013

The Back Bone's Connected to the...

We got in to see ortho! I was sent an email this morning about a last minute opening this afternoon. Craziness, but we made it happen.

I really like our ortho. She's new, but seems to really know what she's doing. SB isn't the most popular diagnosis these days, so I sometimes get the impression that some of King's specialists or people are kind of dusting off cobwebs to remember SB details when we talk. I don't get that with her, she asks the right stuff and looks at the right things.

Anyway, she was not concerned with his back. She said a degree or two a year is to be expected and he looks alright to her. She and I talked over tethered cord, what I'm seeing, why she's not concerned about that. Lots of relief. She sent him for x-rays afterward (which he did not like) to see how much he's changed/if he's changed. She also recommended that his wheelchair get adjusted since the kid is growing and this is likely impacting his stability, which is totally true. We also talked a bit about long term scoliosis, what it involves, what it would look like if there were actual problems, what those problems would mean. Nothing I need to worry my little head with now.

She also checked out his feet while he was there and asked about his ballerina foot and whether it was getting worse. She thinks that he will likely need a lengthening in the back of his ankle at some point, to keep his foot at 90 in shoes. Right now, his AFO's are doing the job.

So, phew! She's going to call us if there's something on the x-ray we need to know about, but otherwise, let's get on with the move!! :)

Thursday, January 17, 2013

With No Segue

Our new house is awesome. No, we do not yet live in it. Long, boring story, but hopefully very soon we will be moving. In the meantime, I torture myself by daydreaming about how amazing it will be to actually live there. It is a Dream Home in every sense of the word. ;)


The potty action started great, then as I should've anticipated, everything went out the door when the holidays hit. Bedtimes were all over the place, we were all sick, lots of grandparents needing to babysit... Anyway, as soon as our routine started up again, I dusted off the potty and we got back to it. It's so very strange to potty train when nearly every factor is in my control and he has none.

All in all, things are going well. Lots of clean times during the day, lots of potty action, but it's still a learning curve I'm trying to master. All in time.


Remember the pregnant Mom I met at the library? In this city, six degrees of separation is really only about two degrees, so I was able to find her! And of course, she blogs ;) Her beautiful daughter, Ava, was born on December 4th and she's doing very well. This little fighter and her family are amazing. You can follow her story here.


Kingsley turned three this week. It feels like his first year was really heavy and consuming and action packed, and the next two have been kind of chill and just a chance to settle in and be comfortable. He really does feel like a three year old though. He didn't feel much like a one year-old when he was one because of the absence of walking and talking or all of that physical growth stuff. He didn't feel much like a two year-old because of the lack of language and tantrums (aw, shucks!) and toilet training trials that happen then. But three feels like three. I think three is going to be a good year for him.

For those of you who keep track of these things, tomorrow will also be his three year shuntiversary! He's still rocking Billy the First, which is awesome.


We are officially  members of the YMCA. Kinger and I went in there last week and had our tour, signed the papers and got our cards. We went for a workout Monday and had a wee snag though. When I dropped him off, I was one of the first there and they asked if he could stand. No. Could he crawl? No. No biggie, just have him sit there on the play mats. When I picked him up, I realized I had put him in the baby room and he was surrounded by infants. Today, he hung out with the kids his age and I had to drag him out of there (not) kicking and screaming.


And whatever is a mama to do when her camera stinks and her photorific sister refuses to cross the country to update her ancient blog header? Well, obviously, I went back to Laura! So. Ridiculously. Cute. The restructuring is a work in progress. I still need to play around a bit. :)

Monday, December 3, 2012

Big, Stinky News

Alright, so Kingsley is almost three years old (*sob*) and as he is nearing the end of what I would consider his babyhood, I suppose the time has come for me to stop discussing things that would make him cringe to read as a teenager. However, this is a big deal and he's not yet three and people talk about potty training all the time, so I'm going to also.

We started potty training Kingsley.

Okay, so yes, I realize 1/3 of you are thinking: "Sure, that's cool. Have fun." and that's just because you don't understand the ramifications of an announcement of something like this for someone like Kingsley. IT'S HUGE!!!
1/3 of you are scratching your head wondering vaguely what in the world this would entail, how..???
And the other 1/3 of you have kids with SB and have either already heard the gross details or are wondering what the gross details are.

I'm not sharing gross details here! But if you really want to know, you can ask me on Facebook or somewhere else that I can discuss it where Kingsley won't ever read it. ;) I will share some G-rated details though.

In the long laundry list of diagnoses that Kingsley has on paper, neurogenic bowel and bladder have been on there since just after he was born. Basically, he doesn't have control over that part of his body. Everything functions, just not within his control.  He will never be 'toilet trained' the way other boys will be. We use a combination of medication and catheters to control the bladder business and when that is working, he is dry during the day. Yay!

The other stuff is a bit more complicated. He's been on various medicinal interventions since he was six months old to make sure that he doesn't get constipated (like September!), but that just means he goes. All. The. Time. No control means that if he laughs, cries, yells, sneezes, coughs, bends, turns... yeah, you get the picture. I've had about enough of this, so decided it was time to do something about it.

My first change was adding probiotics to his diet. THIS IS A MIRACLE WORKER!! I can't express how amazed I have been by this one change. I put Kefir in his milk in the morning and voila! There was a change. There's no way change two would've happened without this change first. I wish we had done this ages ago. The 'change' is graphic though, so I will spare you those details. You're welcome.

The second change was the actual bowel training, as it's called. We are now training his bowels to empty when we want it to and not empty when we don't want it to. Isn't this just lovely talk? Bowel bowel bowel. It's such a gross word, but why would it be anything else? Anyway, we have started with the least invasive technique that doesn't require very much effort and that I'm not describing here. Then I put him on the potty seat and he sits there, playing on the iPad, happy as a pig in... Well, anyway, he sits for about 20-30 minutes and *knock on wood* then the magic happens and he goes and that's it! We throw a party, he yells out, "I poop on potty!!" even though he has no real clue about what this means and then I put him to bed and call my mom to celebrate and send disgusting pictures to my poor sister who also celebrates.

This may all be premature as it's only day four of the Training and it's only been the last two days that the magic happened, but I have high hopes. He wore one diaper all day long! It was clean! Like underwear!

Underwear, dude. It's a comin'.



Friday, May 4, 2012

I Love You

Kingsley is talking endlessly now and imitating everything we say. He'll imitate labels, names, sounds, phrases. He's doing amazing.

I was waiting though. After your baby first says MOMMY, the next thing you wait for is I LOVE YOU. Nothing melts a mama's heart like those three little words. They're usually all jumbled up and mushy, but there's no mistaking it when you hear it. 

Three days ago, Kingsley said it. He was in his stander watching Sid the Science Kid, I was running around cleaning up just before we went to get the girls from school. I walked in the room. King's eyes were glued to the TV as he said:

"Sid," [pause] "I wuh wu" [pause] "Mom."

Then he looked at me. I'm not sure if he looked at me because the 'I love you' was meant for me or if it was because I was laughing so hard and that pulled him away from his beloved Sid. Either way, it was a priceless moment. 

Since then, he's said, "I wuh wu" to random strangers at the library, the neighbour, one of Rachel's classmates, and today, he really truly said it to me - the TV was not on. ;) 


Be still my heart. 


Tuesday, February 14, 2012

Things I Love

It's Valentine's Day!!  What better time to think about the things that you love, right? ;)

Right now, I love...

My artistic little boy 
I'll confess, introducing him to crafts didn't even cross my mind. So many things just don't seem to occur to me! He didn't show any interest, but again, that was probably because he hasn't had the same experience with exploring that the girls did. Once I (*ahem* or maybe his OT) brought the craft supplies to him, the floodgates opened. Now he's constantly rolling up to his sisters' craft table and causing mayhem. 

Saying goodbye
There have been so many points along this journey where I pause, panic, and wonder: "Is he EVER going to learn to..." and eating non-jarred, non-pureed food was very top of that list. Because of Kingsley's Chiari, he didn't mouth toys or really anything. He had an extremely sensitive gag reflex which meant he easily tossed back to me anything that I tried to get him to eat. Once he had his decompression, we finally began making very slow progress with him eating food. Eating puree's was an accomplishment. Donating all of these leftover jars to the foodbank is an even bigger accomplishment. I'm thrilled to be saying good bye to puree's once and for all. 

Opening wide
I zoomed in as he was opening wide to shove more of his cupcake in. Yesterday morning, he actually got mad when I tried to feed him his oatmeal. It was the first time ever that he wanted to feed himself a food that he wasn't one of his favourites. He wants to eat now and he wants to feed himself. It's been a great year. 

Curious King
He's fascinated with the stairs. Neither of us really knows where this is going to go or how he's going to finally master these things, but he is enjoying testing his limits and I'm enjoying watching him. So far, when he's at the top he just pulls himself forward until his torso is off the step and his arms are on the step below. Then he doesn't know what to do, so he pushes back up to the top. Repeat, repeat, repeat. At the bottom, he's just aching to hoist himself up. He's too small right now, but it's only a matter of time. 
(don't freak out - he's not allowed near the stairs unless I'm there! the baby gate gets locked at the top unless I'm sitting on the stairs ready for him)

My sweet date
Kingsley and I are taking a break from some of our activities right now and just hanging out more. Last week we went on a date to the mall. He used to hate elevators, but now he loves them.  He also loves timbits, people watching, spinning in his wheels and blowing kisses to all the older ladies that stopped to say hello. He likes to check out the wheels that other people are driving. He also likes to show off how fast he can go. He's a fun date. 


Happy Valentine's Day!

Wednesday, February 8, 2012

Dirty Clothes

It's a little odd, but I get so happy when I see dirty clothes these days.  

Dirty clothes because it's Kingsley that is dirtying them. For so long, his clothes looked pristine, like they weren't even worn. I've made a lot of money reselling them, but that time has passed! 

His clothes get food stains because he is eating food and feeding it to himself. Such a strange hurdle that has everything and nothing to do with SB, but one that we are getting over one meal at a time. His diet just continues to expand and he's starting to eat as much as the girls. No fruit or vegetables though - that's just craziness. 

His clothes are also getting stains all up the sleeves because he rests them on his wheels - his bumbobile wheels, his wheelchair wheels, his dynamic stander wheels. He rests them on there when we're outside the house doing stuff and they get just filthy, but it's awesome because he's out there, getting around. 

His clothes are dirty because his belly sweeps my floor as he crawls from one side of the house to the other. He used to be so passive, we worried that he'd never learn to crawl. He'd just lie there or sit propped somewhere, content to just be. He's not remotely content with staying still now.  He moves from sitting to lying to rolling to crawling to lying to sitting... and then all over again. But it's on the floor where the girls spill and dribble and stomp through in their boots, so he's messy. 

His clothes are getting markers and glue and paint and glitter all over them because he loves to play with his sisters and do what they're doing. He's so much more interested in toys and games and crafts. He colours pictures, he stabs paper with markers, he freaks out when he gets glue all over his hands and wipes it across his shirt... okay, that's not totally awesome, but it's still progress.  ;) 

At night when I take off his clothes and put on his pajama's, I love looking at the mess he was wearing. I used to feel guilty about tossing his clothes in the wash since they pretty much looked the same going in as going out. 

Who gets excited about dirty laundry? This mama. :)  I'm not taking any of this for granted. 

Sunday, January 15, 2012

*TWO*

My sweet little boy turned two today.

TWO.

Two years ago he was born. I get so emotional when my children have birthdays. Remembering their births is so lovely, there just aren't words for how it feels to bring a child into the world. It's magical. Kingsley's birth was no exception, but since I've gone on and on about his birth day at various times, I will spare you today. ;)


I know it's kind of cheesy to say that I'm inspired by my own son, but I truly am. He doesn't do anything that any other kid doesn't do. He just goes about his days, his weeks, his year learning, trying, playing and developing. But when Kingsley does it, he's defying odds. 


I cannot even begin to count the number of times this year I have been reminded of the brilliant words my friend, Cassie said about her own son, Caleb: I've seen him do things I didn't think he would ever do. So many moments this year, I have seen Kingsley do things that amaze me. Things that I wasn't sure he would ever do. Things that if you told me one year ago today: this is the year Kingsley will do THIS, I would probably have doubted you.


This year, Kingsley showed us for the fourth time that he is a fighter. That he will bounce back. That he will continue to be resilient. He learnt to play. He learnt to hold his own cup. He learnt to hold a spoon (although, he did also learn to throw it instead of use it to eat. Baby steps). He learnt to eat. I forget that a year ago he was barely eating solid foods at all, nevermind finger foods, that he didn't even start eating solid food on a regular basis until the spring and that I still have a cupboard shelf full of baby food because he only just stopped eating it a couple of months ago. He learnt to communicate with us... in ways other than words, but he does get his point across! He learnt to sleep through the night - ALLELUIA!!  He learnt to roll over both ways (again). With support, he got up on his feet for the first time.


This year, Kingsley learnt to MOVE. His world grew exponentially at the end of the summer when he learnt to make his Bumbobile GO. And then his dynamic stander. And then his wheelchair. And then his body as he learnt to roll and twist and wiggle and finally crawl. Alongside all of the moving, Kingsley also learnt to sit. On his own, on the floor, with his hands up, playing, reaching, clapping, slipping into an Elmo's World coma.

It has been a big year for my little rockstar.


Yesterday, we had a little party to celebrate the big year that he has had. He was not that impressed. He cried, a lot. Covered his ears, his eyes, whined, and then finally accepted that no one was leaving and so joined in the festivities. What else are you going to do when you're already all dressed up, right?


Besides, there were presents. Can't be grouchy when there are presents. 


Right beside him, cheering him on every step of the way, were his two bestest friends and biggest fans:



We did it all over again today, because that's just what you do when you're two.




 Kingsley's second year was incredible. It was not without heartache, frustration, and impatience, but those things were so overwhelmed by the joy, excitement, and pride at the incredible kid Kingsley developed into this year.

I am so excited to see where he goes in this next year.

Happy Birthday, Kingsley!!

We love you so much!

Sunday, January 8, 2012

Full of Awesome

Blogger ate my last post. It was a whole year review, but only half posted and then I have not had the motivation to redo it. I hate when stuff like that happens! I know, I know. Those of you who read it are hanging on, desperately waiting for the whole thing ;) One day.


I have a good reason for my blogger-slacking. Kingsley has been doing SO MUCH that I literally dread having to do posts for each and every amazing thing that comes up. It feels like everyday he springs something new on me.

So, here is my attempt to recap Kingsley's last 6 weeks or so.

He started crawling. Rachel started crawling at 7 months, Cordelia at 8 months, Kingsley at 23 months, but who's counting! ;) Actually, it caught me so off guard that I left him in the upstairs hall one day with the girls and answered the phone in my room. When I came back, the hallway was empty and I nearly keeled over in panic. He followed the girls down the hall and into Rachel's bedroom, a nice red rugburn developing on his pretty little bare knees. He was pretty proud of himself. It's a bit of a lopsided commando crawl. I had halfheartedly left up the babygate at the top of the stairs after Cordelia stopped needing it. I've never been so happy to use it!


Other big news... he got his wheelchair! This feels like it deserves it's own post, for sure, but here you are. Yay! It's harder for him to move around the house than his stander and Bumbobile, but he does love it. He can throw quite the tantrum if you dare try to steer him or get him to stop/go when he does not want to. Unlike Rachel and Cordelia whose biggest fear seems to be getting left behind in a store aisle, Kingsley takes off and couldn't give a care in the world as to where I am. The world is his playground. :)

I couldn't get a shot from the front. he won't sit still! 
I sacrificed my toilet paper roll just to get these

His upper body strength is getting a little bit ridiculous. He is doing feats of bravery that make my heart leap out of my throat. OK, so he is no Aaron Fotheringham, but in his own way he is becoming quite the daredevil. He has learnt to wheel up to things (like the fire place mantle), grab the edges and pull himself OUT OF HIS BUMBOBILE. What the heck! I mean, really. Consider that he has no functional use or feeling below his hips, the Bumbo is a deep, heavily supported seat, and you can kind of see why this both amazes and horrifies me. He has also pulled himself out of his bath seat by grabbing onto the side of the tub (I've watched him do this twice, so dumbfounded that I didn't think to intervene). Today after I had gotten him out of the bath, he decided to do chin ups on the side of it. Incredible.

action shot - he's up off his legs here, just holding on

Bedtime has also developed a few problems. He woke up one morning with two welt-like marks on his leg, one on the front at the top, one on the back at the bottom. Seems he had poked his leg through the bars of his crib and twisted for quite some time. We put the bumper pads on and he is slightly less impressed with this addition. To say that he hates them would be an understatement. He spends most of his nap trying to dispose of them. 

poor little guy in his cell...

What I love most about Kingsley learning these new things is the look on his face when he does it. It's like he KNOWS how awesome he is. His whole face lights up and his eyes twinkle with such a mischievous pleasure, I can do nothing but laugh and cheer.

Wednesday, November 9, 2011

Awesome, Awesome, Awesome

"I don't know how to ask this, so I'll just say it..."
"I hope this isn't a stupid question..."
"That's amazing... I don't get how it happened."
"Yeah, explain that to me, I mean it's awesome, I just... how...?"
"So... I saw your Facebook status. How did he do it??"

It's okay, everyone asked. ;) The other day, I posted on Facebook that Kingsley had pushed himself up onto his hands and knees and then posted a picture of him there. I got a lot of texts, emails and phone calls. Everyone was really excited, but no one knew how it was possible! 


The truth is, I have no idea either. He just did it. 

He's been rocking from sitting in a cobbler pose to leaning forward on his hands, then back, then forward, over and over. Sometimes, one of his feet will pop out behind him (think of a really early pigeon pose if that makes sense to you) and then he won't be able to rock back and he'll be stuck until I rescue him or he wiggles the other leg free and flops down onto his belly. That's part one. 

While all of that has been happening, we've been working in PT on getting him to increase his arm strength by putting him on his hands and knees and having him hold himself there. He has gone from holding for about half a second to holding for about 30 seconds. He's so strong! 

Add those two things together and out of nowhere, five days ago, Kingsley went from cobra to table! He just pushed his hips back. He even rocked a bit, like how babies do. I was... ecstatic. I think it was a combo of his abs and hip flexors working and AFO's digging him into the carpet so he didn't slide backwards. Amazing!! 

Once he got there, he screamed. Loud. I think it freaked him out. 

Or maybe it was my screaming that freaked him out, who knows. ;)

Well, that was exciting, what can top that, right? Ha. Pssssht. 

Today, Kingsley and I were working on it again, trying to cue him to push his hips back again and get his belly up. Once again, he was hollering while up on all fours, but then he started moving his hands in under himself and I got a brilliant idea. We worked on that for awhile. I got Rachel all set up recording it on the camera... 

Sorry! The video is lousy, Rachel's five, what can I say? She doesn't get lighting angles yet ;) But, he's pushing himself up all by himself, my hands aren't touching him. 

Over and over and over I tortured him helped him do it. Then I gave up and let him relax, left him on his belly to play with a toy. I looked away to get the camera, put the cap back on and when I looked over at Kingsley again, he was PUSHING HIMSELF UP INTO SITTING ALL BY HIMSELF!!!  

Tears! Screaming! Cheering! And a chocolate bar that Kingsley inhaled in about 5 seconds. I tell ya, for a kid who doesn't like to eat, he sure can hoover back a mini Hershey's. 

He wouldn't repeat it, but I'm still giddy over seeing him do that. Unbelievable. 


And on that note, I want to link you to something that has stuck with me since January. Cassie is another mom blogger out there. It's funny how you can feel so close to someone you've never met, isn't it? Cassie is a huge source of encouragement for so many of us mom's of younger kids with SB. Her son Caleb is 6 and he defines Rockstar. Cassie was constantly telling me that Caleb was just like Kingsley once. Caleb took a long time to get where he is. Caleb wasn't always a walker. I have to be patient, Kingsley will show me in time. Then with this post, she showed me what she meant: http://themclellands.blogspot.com/2011/01/taking-scenic-route.html  Rarely does a week go by that I don't think of this post at some point or another. I have no idea where Kingsley will end up or what he will accomplish, but reminders like this and days like today make it very clear to me that I can never say never. 




that's for you Kris ;)

Thursday, October 20, 2011

Strong and Silent Type

So, Mr. Kinger is digging his heels in now about this talking thing. He was cruising along, doing just fine, did the babbling, picked up a few signs, was able to effectively tell all the nurses last winter NOOOOO, BUH-BUH and do the frantic 'all done' with his hands. He said Mama, Dada, Nana and had a running list of other approximations. He imitated... things were coming right along.


Then he stopped.

What is with my boy and regression? As of 18 months old he was doing just fine, despite not talking much anymore. Just as long as he didn't continue to regress, we were okay.  He hasn't regressed any further. Problem is, he also hasn't made any gains. I think there comes a point nearly every hour where I pause the thoughts in my head and remind myself: THIS WILL COME. ... right??

*sigh*


I keep saying it's just because he's working so hard on everything else. He's doing some ah-mazing gross motor gains, his eating is trucking right along, his play and problem solving skills are flying. When I look at everything he's learnt to do in the last 4 months, I'm in awe. Everything but talking.

I KNOW he can talk. He has talked. He will talk again. He will talk more. I'm good at this waiting thing now.

While I wait though, I figure we'll give him a little push. I have started taking this course called The Hanen Program. I'm not going to lie, it feels a little weird being on this end of a parent education series after leading so many. I have to consciously stop myself from critiquing teaching style or making comments like I would if I were co-teaching. I am there to learn. I must stop telling myself that I know all this. If I knew it all, Kingsley would be talking, right? It's always the annoying know-it-all parent who is doing the most obvious no-no's. ;)

I think this is him subtly telling me to leave him alone

Good news. When we started, Kingsley was saying Mama, Dada, Da-Du (Rachel. And Cordelia actually), and signing all done. Three weeks in, he now vehemently shakes his head no while saying, "Ooooooooooo!!!!" and says ma-meh for movie (Elmo on the iPad). I'll take it. By Christmas, he'll be reciting sonnets.


Maybe.



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