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!

Wednesday, July 13, 2016

How is Nick doing?

I have had a bunch of people asking about how Nick is doing.

I have been trying to get him to take it easy while he is recovering. First using his wheelchair outside and walker inside. Last week we pulled out his crutches again. Nick said he didn't want them and they were too hard. So we took his walker away and crutches was his only option.

He did fight it at first. But once he tried it, and started walking with is crutches he would do more and more.
Over the weekend he was at the cottage with Kyle (I stayed at home and worked). Kyle said he spent the whole time with his crutches. Including going up and down the hill to the water, and walking through Walmart with only his crutches!
This is something he didn't even do before!

Nick also wanted to go up and down the stairs with his crutches. This has been a goal we have worked on in physio. But the difference is that he wanted to do this himself.

After our orthodics adjustment yesterday, Nick's centre of balance shifted a bit (as we are trying to get him straighter). But it hasn't stopped him at all with his crutches.

Yesterday I tried to see how long he could stand for unassisted. We got to about 10 seconds. So I decided to see if he could take those steps again. He took one step and stop! (But of course I don't have any picture of video)

 I am so happy with Nick's recovery! He is good with his crutches, is moving around the house like normal. He isn't having any pain (unless I forget and lift him wrong). He is still staying completely dry all day. He says his feet are feeling better and he can definitely feel when we touch his feet, and it is hit or miss if we do it very lightly.

His back still has a scab on the 'scrape' (as he calls it). And a suture sticking out of the top, so 2 more weeks until he can be swimming. And we have his follow up appointments for MRI and Dr Rutka at the end of the summer.

So Nick is doing really well.

Katheryn is doing well too. She has been good listening and following direction to not be too rough with Nick. And she has been enjoying the summer so far. (We tried getting Nick to run through the sprinkler as well, but he didn't want to).

Wednesday, June 29, 2016

School's Out!

Another school year is done!

They have grown so much from the first day of school!

Katheryn is going into grade 3 and Nick is going into grade 2 next year!
The kids are going to miss their friends (and Nick came home with 2 phone numbers) but this is their reaction for the coming summer

Nick is excited there is no more homework! (Little does he know I have some math-plans for the summer) and Katheryn is sad she doesn't have school anymore.

Their report cards are good this year.
Katheryn got 10 As and 6 Bs. Not surprising that she needs to work on her writing (but has made improvement) and her spelling. And she needs to be more organized. And her best subject, with solid As is math (she is playing with multiplication and division right now... yes I said playing), as well as art and gym.
Nick got 2 As and 9 Bs. His best subjects are social studies and drama. Reading still remains a challenge, but he has improved so much (I had hoped his grade would be higher), and math is higher than I had thought it would be. Nick needs to be more independent, and I can see in his card that he has become more comfortable in school.

Nick tells me that he will be having the same teacher again next year. This would be good, except it would also mean that in 4 years of school he has had 2 teachers.

For now we are looking to enjoy the summer!

Tuesday, June 28, 2016

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

Monday, June 27, 2016


Nick went to school for a couple of hours today and he did great! He should be good to go back tomorrow!

He is spending the whole time in his chair, both to protect him from falling and to preserve his energy. He also has instructions from neurosurgery to not participate in sports, recess or gym. So going to school is still low-key.

Nick said that everyone was very happy to see him back at school (and swamped him... in a good way). 
He really is happy to be back at school, and wants to go the whole day tomorrow. So I will send him in, with his instructions, and I will be home anyways if he gets tired and needs to come home.

We had follow up with physio today as well. We added some extra exercises.
One of the things that I have noticed is that the back of his legs are tight. He has a hard time straightening his leg fully. But physio said that was from being in bed so long, and it will come back with some work.
And with physio the exercises we are adding will help with that.

We have been taking it easy, and now we are working towards getting him up and moving more.
He still gets tired more, but I don't mind the extra snuggles

Sunday, June 26, 2016

Healing and Cottage Fun

With our fundraising event yesterday I wasn't sure how Nick would be, only 1+ weeks after his surgery. I had thought that we would be spending a lot of time inside resting and going out to the party for a while in between. That isn't how it turned out, Nick spent all his time outside and didn't rest at all. He also hasn't had any pain (which amazes me)

So we had a plan for him at the cottage. Including his wheelchair while we were outside, and his walker only inside.
And everyone knew that he couldn't wrestle and they had to be careful of his back. Nick also showed everyone his back as well. Everyone played pretty well together

Nick knows that he can't swim (for 4 weeks). Which made it difficult for him when we went down to the lake.

We did have a plan for him to be in the water. I covered his back up with some waterproof dressing (that I made up) son that he could stand in the water and get his legs wet, And his back was protected if he got splashed.
But Nick didn't want to stand and play in the water, he only wanted to swim. So we put a chair in the water

But the kids could come to Nick to play

 That did make him a bit happier, but he really still did want to swim

Katheryn had lots of fun jumping in the water

And having lots of fun.

I felt bad that Nick couldn't actually go swimming (and have some ideas to make this better for the next time we are at the cottage), while Katheryn had so much fun. But Nick still had fun playing on the boat.

But, in typical Nick fashion, he didn't stay upset for too long and moved on to other activities he likes doing.

The next day at the lake he was better and didn't really want to go in the water

He liked watching from the boat, and giving directions to everyone! 

He definitely was happier today by the water than yesterday

After the busy day the day before, and the hot sun, Nick took some time for rest

We went out for our first boat ride of the season!
It was Rory's first time out on the boat, and she wasn't too sure at first

The kids had fun going around the lake

Overall it was a B+ weekend (with only a couple of tears by Nick about what he can't do).

On Sunday we balanced fun with resting!