A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, December 12, 2014

Our House, Nick's Home

This has been something on my mind for a while.

This is Our home, our Family home. Nick's home
(This picture was taken when it was all shiny and new)

There are accessibility challenges with our home. What I want is a way to get Nick into the house.

The major issue is the steps. There are 4 steps (average of 7" per step = 28" height).
Guidelines mean that if we were to put in a ramp, it would have to be 28 feet long. Information can be found under Accessible and Adaptable Housing if you are looking for help. 

In my head I thought that instead of a ramp we could have steps that Nick's walker could be lifted (by him) onto the step. I want Nick and his walker to be able to get into the house, not the wheelchair. 

But the Occupational Therapist is the go-to person. So a house assessment was our step to get information from someone who knows about accessibility. Talking with her, we should be looking at a lift.

If we are looking at a lift (a porch lift) there are other considerations too. We walked through the house and around outside with Serena (Nick's OT) and the medical supply guy.

The first question to ask ourselves was inside or outside?

Considering it is December and the ground is covered in snow. A lift inside the garage may be better. We have a one car garage. We don't now or ever plan on parking a car in the garage. Right now it is full of junk, but we can get rid of most of that stuff for the room.

There are questions about permits and if we even can do it. We don't have a door into the house from the garage. But we can (hopefully) add one. We have a header in the garage in the hallway.
Then there is the issue with clearance in the hallway. For an entryway.
Nick can turn around in the hallway in his walker. But there is limited space

Our house entryway has limited space, but a big closet. Also filled with stuff we can relocate. Which gives us a couple of renovation options. A door from house to garage, a larger entryway (taking out the closet) and a porch lift with a landing just inside the garage.

The porch lift comes with a price, the renovation comes with a separate price. We'd need to talk with a contractor about that. There are some one-time only renovation money we can apply for, or there is yearly money we can apply for.
There are a couple of other permit-related challenges we need to figure out as well.

Then we had another conversation.
Are we trying to fit a square peg into a round hole?
Are we trying to make our house accessible only to realize that we can't? It is a 2 story house. Yes we are working to get him into the house, but what about giving him access to the whole house?
Even our family room is a step down.

I don't know what to think after this meeting. We weren't considering moving anytime soon. Yes I know a bungalow is the perfect solution for us. But we have settled in this neighborhood. This is our home. We don't want to move. This was our first house, everything is where I want it to be, I thought and considered every single paint colour on the walls. Designed the kids room (even if I didn't paint them), everything in our home is from our lives together, as a family.

Or am I being selfish? Not considering Nick's ability to move around his own home.

But Nick is mobile. Yes he needs his walker or canes to move, but he can climb the stairs on his feet if we hold one hand, or on his hands and knees by himself. Will that work in a couple of years. I'm not sure.
Will he be able to move better in a couple of years. I'm not sure.
He moves excellent with is walker, his wheelchair stays outside, his canes are usable for small areas and he has forearm crutches that don't really work for him (yet?).

So the visit and talk of accessibility left me very conflicted. And a little bit close to tears. I just want Nick to be able to get into his home!

Tuesday, December 9, 2014

Decking the Halls

The kids have been good (enough) and are all ready to deck the halls!

Katheryn pulled out the hand decorations from last year and compared how much their hands have grown this year.

We pulled out all of our stuffed toys and had a (very noisy) concert

The tree is all up and decorated (I only pulled out one box of tree decorations this year). And Nick got to pick what goes on the top of the tree.

I think it is missing something. Maybe some presents for good little boys and girls


Saturday, December 6, 2014

Chopping down our tree

Another year of our family tradition. Cutting down our Christmas tree.
This year we visited the same farm we went to last year. Spademan Tree Farm.It has nice trees, close to the parking lot, without a lot of hills. They also have wagon rides and hot chocolate.

We have the wagon for Nick to go into the fields with. It has big wheels so go over rough terrain.
Nick seemed happy to be in the wagon at first.

He even got to meet the newest member of our dog-family (Macklyn)

And this year was Nick's year to pick out the tree

Kyle and Katheryn cut it down

 And counted how old the tree was

The tree is beautiful and has a huge and full bottom.

But Nick wasn't very happy. Yes he smiled for the pictures, but the rest of the time he just looked sad. Nothing hurt, he wasn't cold, he said that nothing was wrong.
When we got back to the fire he cheered up

I think he was upset being in the wagon. Not being able to move around on his own. So we are going to have to think about how we will be able to make this happen next year. We'll have a whole year to think it over. And it will depend on if there is snow or not.

It can't be a family tradition if it doesn't work for the whole family.

Wednesday, December 3, 2014

Nick's new wheels ...coming soon

It is hard to believe but it is time to look for a new wheelchair.
It's been 3 years with the one that Nick has right now. He is outgrowing what he has. And he really, really hates it.

I was reading over my post from 3 year ago and my feelings about the wheelchair and it's uses at that time. Now this post was raw feelings about a wheelchair, as a wheelchair. Not feelings about a wheelchair as a way for Nick to move around.

The thing is, is that Nick doesn't like his current wheelchair. So he doesn't like moving it around himself. I have to beg and plead for him to move. I have never seen him racing down the street or hall in his chair. I have seen him move, I have seen him go places with it, but never racing. Never having fun moving in it. He might have fun sitting in it. 

I feed into this. I know that I do and I still do it. I push it, I treat his chair more like a stroller he can move as he wants to, than a chair he must move around himself. At school they have been trialing a smaller and lighter chair. And Nick has been liking it, and moving it.

This new wheelchair that we have ordered, the Tsunami, is lighter (11 lbs to the Quickie 25 lbs). It is a rigid frame and can't fold up, but I think in 3 years we only folded up Nick's chair once.
It will have lighter wheels (that we need to keep pumped up). It will also have the single handle on the back that can be lowered (or removed).
No arm rails, which keeps it lighter. As well arm rails is something that Nick uses so he doesn't have to push.

There will be a small neck rest. This was brought up for bus rides. When Nick is on the bus he rides in his wheelchair. If the bus were to be in an accident and the seat sits below his shoulders there is no support for his head. Imagine yourself in an accident, whiplash, but if there is no seat (or headrest) there is no support for the back of your head. So we got a headrest (but I think we'll remove it otherwise).

So it will be lighter, easier for Nick to move himself (and I told him that is the expectation). Of course it will be orange. AND most exciting of all. It will be good for sports.
We are still about a year out of Nick being old enough for the adapted sports that are in the area, but this chair will work great for whatever we choose to do.