We have Lift-off!

The renovations that we made last year have been making our home more accessible for Nickolas. But we still had bigger things for our wish list. The long discussed porch lift.

Last year we applied for, and received a grant from Easter Seals to cover $3000 of the cost of the porch lift, and another $1500 from For the Love of a Child. This made our cost for the lift only $700! So we ordered and got the lift in December.

This was such a big chunk of the $10 000 cost, but we still needed to figure out what we were going to do for the construction portion of it. And I thought about it every time I carried Nick in and out of the house!

Kyle hasn't been working, and as money is getting tighter and tighter $5000 was a lot of money.

So Kyle put his construction hat on this month and built a porch in the garage. Which meant that we could actually get the lift installed!

Kyle got to be the first one to try it out!

And when Nick got home from school we showed him his surprise!

He was a little bit nervous about trying it out

But was excited that this was all his!

He wasn't quite so sure when he pressed the UP button and it started to go...

But pretty sure he got the hand of it

And he made it all the way to the top!
But there still isn't a door, so it is a lift to nowhere at the moment

He didn't really want to go back down

 And back up

We decided to play a trick on Katheryn and hide when she got home from school

We had to wait a long time!

But as soon as she got home she was excited to try it out with Nick!

Until we have the door and use it more regularly, we were told to still run it up and down every couple of days. I don't think that is going to be a problem

Now our updated wish list:

• Open up the entry way into the family, taking down the half wall
• Make a ramp into the family room (needed some space to do this first)
• Make a ramp (or something) into the backyard
• Take out the front hall closet in the foyer. 
• Put handrails on the walls up the stairs 
• Put a doorway from our front hall into the garage
• Add a platform in the garage
• Get a porch lift and install it inside the garage

Hopefully we will get that door by the end of the summer

Winter and Recess

Winter started in full force when the kids returned from winter break. There was snow and ice and it was cold. Often Nick will come home and tell me about his recess and who he played with and what they did.

The first week of January he didn't have any stories. He just said he stayed inside.

  

Trying to ask Nick about why he didn't go out for recess he said he didn't know, and then it was that there was snow, or the gate wasn't plowed.

I spent some time back and forth with his teacher about why he wasn't going outside for recess. I was upset that he might be excluded from normal school activities like recess.

 There were a number of different reasons. First is the time of getting him ready to go outside takes longer than the other kids and it cuts into school time. Second is that they are worried about him falling on the ice. Third is that he gets cold easily

After discussing I understand. I don't want him missing classroom time to get ready, on top of his cath time. So he will be going outside with has classmates at lunchtime recess and for the short recesses he will stay inside and get to pick a friend to play with him.

I did say that if they are worried about the ice and his walker, then he can go outside with his wheelchair. As well instead of getting his snow pants on, he could cover himself with a blanket and sit in his wheelchair.

We will see what we end up with. But I want to hear more stories about his friends.

Summer weekend

Katheryn had Sparks camp this weekend!

2 days and nights of fun (all by herself)

Katheryn wasn't worried about leaving us, grabbed her stuff and was off with her friends!

She had so much fun! And at the end of camp graduated from Sparks with the rest of her troop.

She got very annoyed with my picture taking when we picked her up.
I expect I will see this face in my future... I just thought I had another 8 years or so...

Nickolas got to have his parents all to himself this weekend. So we went to a picnic at Grandview!
Queen Elsa was there

And Nick got to show us his accessible play ground

And he had a blast swinging on the swing!

And showing off his Ninja moves. He played with his friends from school that were there.

We did find out that Katheryn fills in a lot of the empty space. I don't know if I have ever heard Nickolas talk so much!
We sat and watched a couple of movies and he talked through the whole thing (until he fell asleep).
What is this, why is that happening, who are those people...

Having each child by themselves this weekend just shows Kyle and me how much they are growing up!

More Renovations

Kyle was busy while we were in Florida.
We came home to a couple of ramps all ready for Nick!

One was a ramp over the step in our family room, so Nick doesn't have to step down, but can bring his walker in directly.

The other thing he did made this little boy very happy!

He made a ramp into the backyard.
So Nick can access our backyard without any help!

It is a little bit steep (all of these pictures were taken right in a row) and we had Katheryn at the bottom to catch him

But he was so excited!

Nick says "I can go into the backyard all by myself!"

Here is our updated wish list:

• Open up the entry way into the family, taking down the half wall
• Make a ramp into the family room (needed some space to do this first)
• Make a ramp (or something) into the backyard
• Take out the front hall closet in the foyer. 
• Put handrails on the walls up the stairs 
• Put a doorway from our front hall into the garage
• Add a platform in the garage
• Get a porch lift and install it inside the garage

Renovations

Since I wrote about making our house more accessible last December, Kyle and I have had an ongoing wish list of things that we want to do to make the house more accessible.

• Open up the entry way into the family, taking down the half wall
• Raising the family room floor so that Nick can easily bring his walker into the room
• I really didn't want to do this. The step down was a feature that I liked in the house. And it was going to cost a lot of money
• So we had a second idea
• Make a ramp into the family room (needed some space to do this first)
• Make a ramp (or something) into the backyard
• Take out the front hall closet in the foyer. This will give Nick lots of room to move his walker around and open up the front hall space.
• Put handrails on the walls up the stairs to let Nick hold on both sides and walk up the stairs
• Put a doorway from our front hall into the garage
• Add a platform in the garage
• Get a porch lift and install it inside the garage

This was kind of our list of stuff we wanted to do.

It will open up the house and give Nick total accessibility to take his walker anywhere on the ground floor, and out into the backyard. And it will give some maneuver-ability in the front hall.

We got some quotes for some of the work and were shocked at the prices. Thousands of dollars just to put a door into the garage! We wanted to get some other opinions about how much some of the work would cost, because it seemed exorbitant to us.

Kyle and I have still had differing opinions if we want to access the March of Dimes home and vehicle modification grant, this is $15,000 lifetime maximum for home modifications. I didn't want to limit Nick's availability to money that we spend when he is only 5. I wanted to see how much we could do ourselves, and maybe try to apply for money from Easter Seals (max $3,000) annually and see what we could pay out of pocket ourselves. So then we had to step back, and put thinking on hold.

Then Kyle got laid off (which is part of his job and not unexpected)

We had a wish list and Kyle had some time.

So I came home one day to find this...

Kyle took down the half wall and now our dining room and family room were completely open

Nick loved it, and it opened the space up

We had to move some of the furniture around for awhile, but the kids loved this new seat that was just their size!

The next week was time for the front hall closet.
This is how much space we had

Again, when Kyle knocked down the walls it made more space

That was it for renovations for a bit.
But Kyle has a lot of plans for the week that we are in Florida!

This is our wishlist right now:

• Open up the entry way into the family, taking down the half wall
• Make a ramp into the family room (needed some space to do this first)
• Make a ramp (or something) into the backyard
• Take out the front hall closet in the foyer. 
• Put handrails on the walls up the stairs 
• Put a doorway from our front hall into the garage
• Add a platform in the garage
• Get a porch lift and install it inside the garage

Accessiblity and snow

This winter has been cold and we've gotten a lot of snow in the last couple of months.

This isn't anything unique to Nickolas or our family. But it is newer for us (I wrote about it last year as well)

The snow and the cold brings up some issues for Nickolas and his ability to move around outside.

It means loading everyone into the van for even little trips. Some days it is because it is minus a million degrees.

But then it is also for reasons like this:

Everyone knows they are supposed to shovel their driveway. Not everyone does.

But I can actually push Nick pretty well through slush and moderately unshovelled driveways.

Except for someone who doesn't actually have any idea about mobility challenges. Just knows they need to shovel the sidewalk. Don't acutally shovel the end of the sidewalk so that there is street access.

It was left like this for over a week. I did contact the city, and the next day it was shovelled.

Of course with snow and parking lots.

Because why do you need to park in these spots? They need to put the snow somewhere?!

I can't wait for the snow to melt

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!

Physiotherapy

Physiotherapy has been a challenge for us.

Maybe it is because Nick is getting physiotherapy through school and I'm not able to be there (but I  am welcome). So I don't see the day to day changes and actually see the progress he is doing.
I just feel that we aren't doing enough
I feel that we should be working more, but I am just so tired all the time I can't think about adding something else to our plate (which is not very full to begin with).
I've been looking at some more supplemental physiotherapy to go with the school program, but when I mentioned it to our PT at Bloorview she told me I should be looking at recreational activities instead.
It kind of seemed odd to me. Like she was saying, don't look at doing any more PT, it won't help, just keep him active. Like they are giving up on what abilities he can continue to gain.

I've been looking at recreation activities to sign Nick up for. In my head I want him to do something like soccer where he can practice kicking and walking in his walker. But I can't find it. Grandview doesn't have recreational activities for his age group (other than swimming).
I'm sure there must be something out there.
But I want it to be easy to find and not cost a million dollars, and fit into our schedules.

We have Nick signed up for a bunch of camps in the beginning of the summer (before his surgery) and I'm really excited to see what he will do with the conductive education camp.
And part of me is still waiting for that miracle.
That step on his own.

Physiotherapy has been the tool that we have been using for him to gain strength and ability and awareness of what his potential is. And it has been hard, and there has been a lot of fighting and crying. But we keep going so that for one hour a week I know he is working hard.
I know it isn't enough. And maybe if I hd pushed for more intensive physiotherapy earlier he would be able to take that step.
Maybe he would be strong enough
Maybe I failed him

As his mother aren't I supposed to provide him with all of the oppurtunities available to him
Work every single day, concentrated work.
Or has my laziness and spending time just sitting and watching tv cost him the opportunity to gain strength to walk?

Nickolas does not function at the level we expected. His lesion when we were pregnant was L5-S1, on actal delivery the lesion (hole) was at S1. Even his sensory (that I've been able to try out) is S1. But as he gets older and we learn his muscle stegth he isn't at S1, or L5 or even L4. L3.

At Bloorview this month the PT went through the information with me and what it meant. Being able to move muscles against gravity is what is functional, not just being able to move that muscle. And check marks down the side of the paper that labeled him at L3 function.

It still hurts. And I really try for it not to hurt any more. And maybe one day it won't. But I still remember the lists we looked at when I was pregnant. And looking at L5 and S1 and what that will mean for wheelchair and walker and community and home.

I've been looking at wheelchair ramps everywhere we go now. And thinking of Nick as an adult and how inaccessible to world could be, and how hard he will have to work to be able to ... just be able. And then looking at our own house, and realizing how inaccessible it will be once he is older as well.
You can't move a walker through the house functionally. Yes he can go up and down the hall and turn around but it's a lot of work. And we don't have ramps outside the house.

How can he live like that? Why does it have to be like this?

And I know that I am rambing, and I'm ending off with a different focus than what I started with. But physiotherapy is the tool that we have been using to give Nickolas the ability to gain function. But as he gets older and older I am worried he is reaching his functional potential and it hurts me.

Fun Day

Just sitting around having fun!

And trying out a new toy!
The Radioflyer Cyclone

It is avaible and accessible for Nick. It moves using your hands and rolling the wheels. It spins and twirls and the kids love it!

Thanks to Great Auntie Wendy and Uncle Mike for picking it up in the States for us before it came to Canada!