Friday, March 29, 2013

A King Lives Here

Five and a half years ago, Jeff and I bought our first house. We had a one year-old and a baby on the way. I thought we had found our forever home. It was a bit of a fixer-upper, but we figured we had our lifetime to do that, after the kids were older and had stopped destroying things. It had everything and I couldn't ever imagine having to move. Jeff always saw it as our 'first house'. He wanted something bigger, something newer.

When we found out about Kingsley, moving was one of the first things we worried about. We were told we wouldn't have to worry about it, accommodations could be made, he would be a walker, wait and see ;) We waited. We realized after his fourth surgery that he was not going to be a walker and so the ball starting rolling on a new home for us.

Our first decision was a location. If King was going to be on wheels, I wanted to switch schools. We chose the highschool, then looked at the feeder elementary schools and started looking at the areas. Our second decision was whether we would build or renovate. We came very close to buying a gorgeous house and renovating it, but when we had a contractor who specializes in accessible reno's come in to assess it, we realized it would cost nearly the same to just build from the start and make it all perfect ourselves, minus the part where we live in reno-land. Jeff knew a builder who did only custom homes, so they started to talk.

In December 2011, we put the deposit down on our lot. I googled and googled and asked and read, trying to find out what we should incorporate into this house, how to make it perfect for all five of us, both and in the future.

It's really weird to stand across the street now and see how different things look less than a year later! 

Our builders, Crown Homes, were absolutely amazing. I cannot say enough how fantastic they were to work with and how amazing they are. Every single detail was attended. They listened to every request I had, worked in every element and came up with so many ideas of their own. The end result makes me want to pinch myself every morning when I open my eyes. This home is not only accessible, but it's gorgeous. It doesn't look like a barrier free home, which was something that was important to me. It's subtle, which makes it feel like it was made for all of us, not just Kingsley.

But of course, none of this would have happened without Kingsley, so a great deal of thought went into his needs and future needs.

**I have to make a disclaimer here. I found I was putting off doing this post because our house isn't 'done', by which I mean that I have all of these Pinterest-y ideas for it that haven't yet happened. It's not all decorated and pretty, like it should be. And, every time I turn around, the kids have made a mess somewhere. Then I realized, oh well, this is my house. One day, when the kids are all grown up and moved out, it'll look like a magazine cover. Until then, overlook the stuff that isn't that pretty and pretend it is. ;) I'm also not a great photographer, so sorry about that. 

OUTSIDE:
Thanks to our fabulous, snowy Canadian winters, the yard is not yet done and will have to wait until the ground thaws and dries out before it gets finished. Eventually, it will have a concrete driveway and walkway up to the front door that will be level with the front porch which is level with the front entrance. I was anti-ramp as they are usually a bit unattractive and draw attention to the fact that someone has mobility challenges, which entices burglars so I've read. The concrete driveway will also have a path extending around the side of the house to the back patio, etc., but I'll have to save all of that for a spring/summer post once it's done. There's also a pool, but it's currently full of ice and surrounded by dirt and snow, so that'll be later also.

GARAGE:
We have a double garage that is long and wide. There is enough room for two vans if you wanted, with space to wheel around on both sides and in the front. We did this in case we ever got a van with a ramp, there is room for that. The entrance from the garage to the house is level. There's a bit of a lip that Kingsley currently has trouble with, but once he is a bit more adept at getting over bumps, he'll be fine.


BASICS:
All of the doors and hallways are a bit wider, all of the outlets are a little bit higher, and the light switches a little bit lower, none of which is not noticeable unless I point it out. The door handles are all levers. The house has an open concept which I appreciate so much now that we are here. The rooms are all big, which seemed excessive until Kingsley started to explore and had space to get around any furniture and go anywhere. He doesn't get stuck, he doesn't get trapped, he's not blocked off. It's amazing.



LEVELS:
The house is one floor with a mostly-finished basement. Upstairs are a play room/future office, kids bedrooms, our bedroom, great room and kitchen. Downstairs is a rec room, laundry, storage, and more bedrooms. It was a given that we would need some way for Kingsley to get downstairs independently. We started this journey when Kingsley was barely two years-old and finished just before he turned three. In that time, he developed in so many ways that we had to keep altering our plans. At first, we planned on wider stairs (for a future lift of some kind) and a rough-in for an elevator. We kept the wider stairs, but ended up just putting in the elevator, then we made the elevator all automatic so that Kingsley can just use it on his own. The elevator has lost it's novelty for me, but the kids and guests all think it's cool ;) It's about as loud as a garage door opener, which is something I'm asked all the time. You can hear it, but it's not that loud. It's small, but not claustrophobic... unless you're actually claustrophobic, then it would probably be awful. All five of us can squeeze in at once with King on wheels.


Another thing that we did was a built-in baby gate, or built-in wheeler gate! Open stairways give me nightmares, so our builder had a gate built that matches the stair railings and added it right before we moved in with a latch to keep King out. It blends perfectly.


BATHROOMS:
There are three bathrooms and a rough in for a powder room in one of the basement storage areas. The main bathroom upstairs and downstairs are nearly identical and fully accessible. They both have huge barrier free showers that King can roll right in (when he's older and we get a shower chair). There are two shower heads, one that is hand-held or put on an adjustable bar and then the usual one for the girls. There is no vanity, only a sink on a counter. The cabinet man said that we could add to it later on when or if we find a need. For now, we have no clue what King will want in there, if anything. There's also a wheelchair parking space beside the toilet and space to spin around if he wants to do that. I imagine we will do shelving in there at some point, hooks, something Pinterest-y. ;)


two faucets in the shower - one for standers and one for sitters

Our ensuite bathroom is not barrier free. He can get in and move around just fine, but we have a regular vanity, a regular bathtub and a shower with a lip. It's the only non-accessible place in the house, although he loves playing with the bathtub faucets and opening and closing my drawers.


BEDROOMS:
There are three bedrooms upstairs and three downstairs. Currently the girls are sharing a room, but they have the option of moving downstairs whenever they want. They're both terrified of being away from us, so I don't see this happening for a few years. Their bedroom is technically accessible, but the amount of clothing and toys on the floor makes it notsomuch.

if I had any skills at all, I would've been able to make this photo overlap better. but I don't. 

Kingsley's bedroom is big enough that he has plenty of space on either side of the bed and a play/therapy area on the floor. We had the ceilings reinforced with extra... blocks of wood? I forget what they were called. Anyway, this was just in case we ever needed a lift or support of some kind for him. Another SB mom recommended we do this. We added a lower bar in his closet and a few shelves to make it functional for him.

I cannot get decent pictures of his room. it's messy and very sunny.

There is another bedroom in the basement that Kingsley can make his own if he also wants to move down there. The basement has big, low windows, so as long as we figure out a way that he would be able to get out in an emergency, he'd be fine. The elevator only goes down in a power outage or fire, not up.


KITCHEN:
The kitchen was so hard to do. In the end, they suggested that we plan for accessibility on the cabinets against the walls and do an island. If we find that Kingsley wants more use of the kitchen when he's older, we can renovate the island without having to gut the whole kitchen. With that in mind, we chose a side-by-side fridge/freezer with water and ice on the door, which is easier for King to get at than a freezer on the bottom or at the top. Beside that is a bar sink with counter space that is open underneath. Along the other wall is all drawers instead of cupboards that he won't be able to reach into. The microwave is down low, also. The stove is a regular stove, but we can replace it with one with knobs on the front when King and Cor are a little less adventurous. On the island is the regular double sink, a bar-height counter and the dishwasher. The dishwasher we bumped up a few inches so that he can reach in better. I kind of like this for me! There's also a pantry with adjustable shelves so that we can put things he will need within his reach. The rest of the cabinets are tall and barely within my reach, so we will put things he won't need up there.




When we redo the island, I think we will drop it from bar-height to table height where he will be able to wheel right up to it, expand it out and add a few more shelves. That is years away, though!

MUDROOM:
We have a large mudroom since the laundry is in the basement. I couldn't commit to shelving/cubbies yet, so we will wait a while before we do that. I get a little obsessed with Houzz and Pinterest, trying to plan the perfect mudroom and I think I have it, then I'll see another. Those sites are like crack! I do plan on having hooks, benches, and somewhere for King to wheel right up and store his stuff along with the rest of us.

FLOORS:
A big thing that took me so long to decide on were the floors. There's a lot of flooring here. I ended up insisting on laminate over hardwood. It looks gorgeous and so far everyone has told us we've made the right choice (or they've just been nice and lied to us). Kinger is now indoor/outdoor with his wheels and the thought of how scratched up and dirty hardwood would get made me ill. There is also big tiles in the front foyer, bathrooms, laundry room, and mudroom. I have no idea what kind of tile, these details are totally wasted on me. It's pretty ;) The lower level has carpet, which took us a lot of time and searching to pick out. I wanted something durable like in offices, but not industrial looking. I think we ended up with a berber kind of carpet. It's nice. He can roll over it pretty well.

PLAYROOM:
There's an office in the front of the house that we are currently using as a playroom. I like having the kids all on the main floor for now. When they're a bit older and have less toys they can move downstairs and make the rec room their own. It's technically accessible, but man oh man, those kids sure know how to make a mess.


EXTRA'S:
For some reason, I felt really guilty asking for things for ME when we were building this house, but I did manage to toss in some totally guilty pleasures in with all this practical stuff. I got a laundry chute (how else will King get his dirty laundry down there??), those sweeper vac's that suck up your dirt without having to use a dustpan, and a laundry room that made me squeal like a 1950's housewife getting her first vacuum. Oh, the things that thrill me now...

welcome to laundry heaven. there's a folding table with baskets for sorting to the left there. and an iron/board that I'll never use. 

I also got to pick the whole colour scheme (grey), which basically involved me showing pictures from Pinterest on my phone and saying, "Can we do something like this? How about this? I love this! And this!" The designer for Crown Homes is so brilliant, she put together scraps of ideas that I had and turned them into gorgeousness. I may have also pimped out the master closet with those built in shelves and stuff. I want to live in there.

We moved in two weeks ago and the difference it has made in our lives is nothing I could have imagined. I recently visited our old house and only then could I appreciate how closed in and narrow it all felt compared to what we have now. Kingsley can and does go ANYWHERE in this house, he has total freedom in his bumbobile, wheelchair, and dynamic stander. In our old house, if Kingsley disappeared it was because he had accidentally trapped himself in the bathroom and was sitting in the dark waiting for us to find him. In this house, I can hardly keep track of him. He loves 'New House' and still gets excited every time we pull in the driveway. I am just so disgustingly happy and grateful that we were able to do this and that we met all the right people who made it happen. This is definitely our forever home.

Thursday, March 14, 2013

R.G.No.

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

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

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

Which brings me to his casting appointment.

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

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

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

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

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

Tuesday, March 12, 2013

Crazy Good

We are in our new house and it is amazing, there is no other word for it.

The move was on Saturday (my birthday!) and it went perfectly. It was so smooth, I don't think there was a single glitch. Everyone arrived when they were supposed to, everything was delivered and installed on time, and the kids did great at all their grandparents houses.


I know I promised pictures and details, but this house is so beautiful that any pictures I take right now would just not do it justice. I am very good with the unpacking, but things are still a little crazy.

I will say though, I can not get tired of asking, "Where is Kingsley?" all day long. The independence he has here is incredible. He loves to explore, to touch things, to look, to play, to just GO. He has only used his wheelchair in our old house a couple of times and even then could only get so far. The bumbobile is amazing, but puts him at the height of someone on their hands and knees. Here, he spends most of the day in his dynamic stander or wheelchair and he can access every part of every room. I cannot express how grateful I am that we were able to build this house.

He has a new bed that arrived the week before we moved in. It's a top bunk, with the full side rails that come off, but it's a double bed size. We got it from Crate Designs, which is an amazing Canadian company. He loved playing in his new bed the few times we visited the house and watched things being delivered or installed, but come the first night he gave me a look of pure terror when I announced it was now time to SLEEP in the new bed that he loved so much. It took him until nearly 11pm to fall asleep, constantly waking to check and see that I was still there, but he eventually did and the next two nights were/are just fine. He's been skipping his nap, so I'm sure that's helped.


I'm very happy now that the move was delayed a week and that this week is March Break. Having the girls home does slow me down a bit, but our days are so busy settling in that having to get up for school would be dreadful.


Back to unpacking now. :)

Wednesday, March 6, 2013

Three. Two. One...


We don't move until Saturday, but as of today, this is my house!


Things are all falling into place more perfectly than I could imagine. I feel like I am constantly saying this to everyone I see, but our new house is just so amazing. So amazing. I'm going to do a whole post on it at some point about the very cool things that we've done to make it great for Kingsley, but for now I'll just go on and on about how awesome it is for me! It's gorgeous, it's spacious, it's open, and it's just an absolute dream home. I can't wait to start puking up Pinterest ideas all over it!

Talk to me in a week though, I may just be glad I survived the move ;)

 [insert girlish squeals of joy and excitement]


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!! :)

Friday, February 15, 2013

When it Rains...

Isn't it funny how you can have months and months of nothing go by and then all of a sudden you find yourself faced with multiple things all at once? No! It's not funny! It's horribly stressful and it's making me grouchy.

First, exciting stressor: we are moving. In two weeks. Or maybe three. Not entirely an exciting stressor since it's hard to move really quickly when you don't know when you're moving. We need to act fast because my knee surgery is coming closer and closer and we need to be settled before that happens. However, I like things like this and it could be just fine if that's all that was going on.

But. Of course it's not the only thing.

Kinglsey has mild scoliosis, which is kind of normal for people with SB. He was assessed last year and it was only about 13 degrees. I don't actually know what that means, but it was no big deal.

He's always leaned to the left, mostly just when he was tired. He has one side stronger than the other, but a slight curving of his wheelchair seat and giving him something to hold in his hands is usually enough to get him upright.

Nope, this isn't the case anymore. Lately, he's leaning a lot. His elbow is always on the wheel getting filthy, he slouches when he's eating, and the lopsidedness in his back ribs is obvious to me more than it's ever been.

This could be his scoliosis getting worse. This could be Cordelia's super late bedtime tantrums making him really tired. This could be his cord retethered, since it has come on pretty quickly. I don't know. But the calls are starting, the appointments will follow. It's starting to pour.
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