Learning Independence

We went to the first half of our SB clinic last week and met with Dr Church, Nick's Developmental Pediatrician, who we absolutely love!

Everything is going well, but we left with a couple of goals. One was for urology (and I will update that next week). But one of our goals was for Nick to gain more independence.

And that means cathing himself.
Let me step back for a second to explain what this is (just in case you don't know)
The nerves affected by spina bifida include the nerves that go to the bladder. Nick's bladder isn't able to empty itself (except for spasms) and we have been emptying it for him with a catheter. The nerve damage also means that he doesn't feel his penis or his bladder. Which is good in that catheterization doesn't bother him at all.

This is something that we have been trying off and on. We were making some headway in January where Nick would actually touch his penis. This might seem very basic, but it is a very big deal for us.
You know how you hear that boys when they are children are always touching themselves? Not even a little bit. He doesn't feel it is part of his body. When I try to get him to touch it, he makes a face and scrunches up his fingers like he just touched something gross.

In January we started slow. But when he stopped wanting to help I didn't want to push him.

When we saw Dr Church she thought that it was time to seriously try again.
Nick has the dexterity to do it. We talked to him about and he said that he wanted to learn how to do it. I was concerned about a bladder infection, but she said we could tolerate an infection for him to learn how to cath himself.

It took 2 days (4x a day) and Nick could do everything himself. Start to finish. He needed a bit of help organizing himself. And I kept having to stop myself from helping him too much.
Nick's aim isn't perfect (and makes me cringe sometimes) but he wants to do this! But he does get frustrated if he keeps missing.

I am amazed at how quickly he picked it up. But I guess he has seen it happen at least every day for 2081 days... That is lots of time to learn.

Nick was so proud of himself when he did it "All by myself!"
And I was so incredibly proud of him as well.

This is also a great step towards independence. It means that when he is at school his EA can assist or observe his cathing, while he can do it all himself. One step to be more ready for grade one

Minion Tires

So if you have a bunch on old tires hanging around your cottage, and want to make something crafty this summer, hmmm what should you do?

Well, my mother in law and I had an idea! (Facebook/Pintrest may have helped too)

So we collected the 7 best tires and cleaned them 

We got some special primer that would stick to tires, and be good for outside.
We put a strip of tape around the middle of two of them (covered one of the centre treads)

We stacked them up so see how they would sit

The kids took some time out to watch us

Then we painted them and let them dry. They needed 2 coats to cover them, and we had to paint-brush paint. No spray paint.
We used regular house paint that would be used outside. We painted them separately, and then stacked them up to get all the middle parts. Only the tops needed to be painted fully, the middle ones didn't need everything done.

Then we stacked them up so we could get a good view
And you could see what we were making

The little one had 1 blue and 2 yellow, the larger one had 2 blue and 3 yellow. The bottom yellow is painted with blue for the overalls.
The tape is removed to show the black underneath. And we taped on some eyes (to practice) and a mouth for the big one.

The next day we did some touch-up and finished the eyes (and the pupil is actually a bolt holding it in place).

It was a lot of fun making our minion tires. The kids had fun watching us (but they didn't help, this was a grandma-mommy project). Now they we have done some of them (and have more tires left over) we might make it a project for the kids the next time.

Cousins and Cottaging

This summer has started off with a lot of fun and crafts! And time at the cottage.

I think we are spending almost all of our time off up at the cottage (the house is a bit of a mess, but the kids are happy)

The kids got together with their cousins to make some art!

This was the finished product.

The idea of it was to cover it with varathane and keep it by the campfire. Good idea in theory, but the varathane wasn't enough protection and a lot of the paint washed away. But everyone still had fun. And we will have fun the next time we try too

I think that the kids are enjoying their summer vacation!

It was raining, so we had lots of crafts to do as a back-up

And we made some cone-smores in the oven (instead of the promised campfire)

Great idea (thanks facebook/pintrest)
Fill a waffle cone with chocolate chips and mini marshmallows

Wrap it all with foil

Then you put it in the over for about 20 minutes o that everything melts (at about 300)
(I did find out that if you put it into the fire, put it on the outside and let it melt slowly, instead of putting it directly into a burning flame and opening up a mass of black sooty mess)

It was a huge sugary success and the kids loved it!

Finally the sun came out and we were able to have fun in the water!

The lake is shallow, so Nick can actually walk around using a tube as a water-walker

We had some beautiful sunsets

And then some campfires

With sparklers

And a couple of mommy-selfies

The kids didn't want to go in. They said that they weren't tired... until they fell asleep

As long as the sun was out everyone spent the time at the lake

The kids were playing super-hero'

And we made up a water game of hockey-golf-soccer

Or was it basketball?

In between all of the fun we still got Nick to do some work and try out his crutches.
He is slowly starting to get more comfortable with them

This is only the beginning of the summer! We are expecting lots more fun for the kids over the next 2 months!

Please don't step over my son

The title of this post might seem like a metaphor.
But it is not.

What I mean is DO NOT physically lift your legs and step over my son and his walker to get by him.

Might seem like common sense right?

If not common sense, then a reasonable expectation of a polite society?
You don't push people out of the way, you don't kick puppies and you don't step over a child who is using his walker in a doorway, or anywhere for that matter.

Yeah he's about 3 feet tall, he's kind of quiet and he pulls around a red walker, but he is very good at maneuvering it in doorways and in the parking lot. And you can take an extra second out of your time to let him go by.

Let me be clear.
You DO NOT step over him

In the last weeks I saw 2 people do this to Nick.

One was a teenager and Nick was trying to get out a door and his walker was at an angle as he was going through the door. This teenager just stepped right over him and the walker in the doorway. OK, teenagers are rude, it was a one-off. Kyle and I talked about (and felt really old discussing teenagers these days)

The second one was an old man. Nick was walking through a parking lot and was going beside our car, this old man (who I thought had parked beside us and was going to his car) went into the space between our cars and then just stepped over Nick and his walker and kept going.

I was too far away to do anything but fume. And fume, and think about it, and get mad. And now decide that we need to do something.

Some people are rude, some people don't have any common sense, and some people are not aware of what is going on around them (and don't care).

But this is different.

This is putting my child in danger. When you step over a child who is pulling a walker that keeps him upright you are putting him in danger. What if his moves the walker, what if your foot gets caught on part of the walker, then you lose your balance and you fall on my son, and he falls down. And gets hurt, or gets scared, or looses confidence in his ability to walk with his walker. 

This is the size of the walker these people are stepping over

I don't really care if you are 15 years old or 95 years old. You DO NOT step over a child, he has every right to be in the space that he is in. If he is in that space, then you are not.

So we sat down and talked about what happened. Nick noticed both occurrences, but didn't really think anything about it. I told him that what these people did was wrong and it was dangerous to him. If anyone does this again to tell them (loudly) to stop.

We will also keep an eye out if this happens again and actually stop and tell these people that this is not right.

I think some large spikes at the back of the walker might be the next step to get the point across...

Standing Frame

Nick has been using a standing frame while he has been at school.

It is a supportive frame that allows the user to weight bear without leaning on anything, and it leaves the hands and arms are free.

We had a standing frame when Nick was a baby, he got it when he was a year old with his first set of AFO's. He wasn't standing by himself yet and we wanted to get him upright with his peers and allow him to weight-bear and strengthen his legs and prepare them for supporting him.

And we used it alot to get him on his feet, and get him used to being upright.
But when he started walking in his walker, we stopped using the standing frame, and he eventually outgrew it.

 This year at school Nick has started to use a stander again while doing his speech therapy work. This one has wheels on the bottom so that Nick and the frame can move around (it is different from a mobile stander which has big wheelchair wheels so he can move himself while standing up).

This stander was bought for Nick for school and is designated for him. So when he starts at his home school in September, this stander will go with him.

So it is great for doing school work. When we were asked if we wanted to borrow any equipment for the summer from his school equipment we asked if we could take home the stander.

While we don't want to have any big and bulky equipment in the house that we don't need... After our appointment with our new physiotherapist and talking about how need for more bracing, I think this is valuable and we want to use it daily.

Nick likes it and asks to go in his stander "just like at school". When he knees start to hurt him, after about an hour, then he comes out. (I am really, really hoping that the new KAFO's will help with his knee pain).

We have some work books for the kids to work on through the summer.

Last summer we were concentrating so much on his upcoming surgery and recovery that we didn't do anything related to school and his teacher mentioned that he lost some of his knowledge through the summer.

So while Nick is still very excited about learning and school and using his standing frame, we are going with it!