Nickolas the Walker!

So Nick has been very comfortable walking with his crutches up. We saw a couple of weeks ago, him taking 16 steps down the driveway.

When we are waiting at the bus stop for Katheryn in the afternoon, and Nick wants out of his chair, we will do some standing

He likes doing it (even though he doesn't show it in the picture). And the kids on the bus cheer him on (many of the kids are in his class at school).

So I decided I would take away his crutch... literally... and see what he could do
I wanted him to walking across the room. For real. To me



Off video, I actually have him stopping in the middle of the room and starting again. This to me, shows that he has control and isn't just using momentum!

I actually made him work hard for the video! We did it over and over again, back and forth.
Katheryn really go into being a cheerleader to him!
Presenting him and calling him a walker!

So this is it! I am calling it!
7 years old and 5 months old, and 10 months after his back surgery.
Real steps! Nick is walking!!!!!!!!!

More Walking

Ever since Nick started showing off at March Break, walking with his crutches lifted, he has been pushing himself farther and farther.

He is really enjoying showing off and being the star of all of these videos!

This is a video that Kyle took one day after school.

He just started going down the driveway with his crutches up!

It makes me wonder how he will do if I make him walk without his crutches...

But enough for pushing him further. Look at him now!

I counted 16 steps!
I'm not sure why he went all over the driveway, it is on a slant, so maybe it is like skiing, and you go side to side instead of all the way down...

Way to go Nick!
I can't believe he only started doing this 2 weeks ago!

Showing off!

We had a neurosurgery appointment yesterday. And I had been worried that Nick wasn't near to taking independent steps again. One of the signs of loss of function and the reason we did the spinal surgery last June.

Nick and I had tried doing the steps over the last month or so. Just like in the video, and so we watched the video together. But I couldn't get him to stop and just take little steps. He would just want to start and keep going.

On Monday we went to visit my work and go to a couple of meetings (March Break fun), and when we were walking back to the car Nick just started walking with his crutches and as I watched he just started to do this...

Over and over and over.
He liked doing it more than with his crutches down!

I know that this isn't the same as having the control to start and stop, but it is an incredible step!

The video I have above is actually 2 clips together. Well, the first video is cut off.
This is the whole first video, Nick thought it was hilarious and kept laughing at the video. Katheryn said it should be posted on Fail Army or Funniest Home Videos

I don't think it is that funny, but he bounced right back up!

We did have our neurosurgery appointment yesterday and got the all clear for another 6 months (earlier as needed of course).
I did mention that at the bottom of Nick's cyst scar is a bump. I think that it was normal (and when we saw orthopedics, he said he thought it was normal as well). But I wanted the all-clear from Dr Rutka. And I got it. He said it wasn't anything to be concerned about.

I also mentioned that Nick's eyes will sometimes twitch. But it didn't affect his vision, that I could tell. But we were having difficulty seeing the ophthalmologist at Holland-Bloorview, and were about 9 months past our recommended appointment time.
So Dr Rutka said he would put in a request for Nick for the Sick Kids ophthalmologist.

And we don't need to be back for 6 months!

Walking to school

Nick wanted to walk to the bus stop today with his backpack

He did it the whole way to Katheryn's bus stop.
He is getting stronger with his crutches.

I don't think he is as strong/stable as he was when he took his first steps. But that is something we are working on. A part of me thinks he might never be able to do this again. I had hoped after the surgery we would be back to that point quickly. But we aren't.
And if he doesn't get back to taking independent steps it will make me sad, but it isn't the end of the world. He is stronger with his crutches. Especially with the higher braces on (which I don't hate as much as I used to). And on the weekends we take the tops of his braces and he is still able to walk with his crutches, but he is a little floppier.

Oops, I just hijacked a post about walking to school...

Last week while we were waiting for Katheryn's bus Nick wanted to get out of his chair and practice standing. When the bus pulled up I could hear a lot of the kids in the bus cheering for Nick (a bunch of kids in his class are on Katheryn's bus). And Katheryn got off and yelled "He does that at home!"
Nick was so proud of himself.
And if that is what he wants to do, then go for it boy!

Today he wanted to walk and run to the bus. So he did.

Yesterday coming home he wanted to be in his chair and his crutches.
I thought it was weird, but whatever. But then I realized that Katheryn and Nick were playing sledge hockey, and Nick was pushing himself in his 'sledge' while Katheryn was the coach

 They went the whole way from Jenn's to our house like that.
Now it just needs to translate on the ice!

Independence

Nick likes walking with his crutches.

That is what he wants to use to move around. More than any other piece of equipment we have. The crutches (the ones that I fought for when I was told they wouldn't be an option, the ones I bought in 2013 because I couldn't get PT to say we could use them.) And 2 years ago, when we just started using them (the link also bring a little trip down memory lane for physiotherapy)

I look back at 1 year ago and see how much he has improved with is crutches!

Nick uses his crutches most of the time in school (except for gym and recess). And in the house. Even when we are grocery shopping or at Walmart, he wants his crutches.
But now after Nick gets off the bus at school, and wants to walk home!

He does get tired after a bit, but he wants to do it!

More walking

Nothing like a little challenge.

When we were at Toronto Island I wanted to challenge Nick and see what he would do if I took off the 'K' from his KAFOs. And then of course he decided to challenge himself further by walking over cobblestones

 

 

My thought was since the testing and surgery came from needing more bracing, now that he has had the surgery and is/has recovered so well, we should see what he can do with less support.

 

 

When we got home I took a video of him on some stable ground to see how he is.

 

His knees are more wobbling. But they have been supported for a year.
But he is able to do it.
And it is a balance between bracing him too much and compromising muscles getting stronger, and not bracing enough and causing injury or incorrect (cheating) form. What we want is enough support to allow him to be functional and not waste his energy and strength.

Day 5 - Almost there

The doctors came and rounded this morning. Everything is looking well. They asked about how Nick's mobility was, and how it went yesterday. I talked about how he got out of bed and took some steps being fully supported by the PT. They said, OK sounds like he is ready to go home. What?!
While I really do want to go home, I am concerned about how he will be able to move around at home.
So we have some goals for today

And some goals before we can go home.
One of the things I worry about is his night routine. He needs to be able to sit on the toilet for at least 1 hour. And pain control so he can at least walk, I don't want to have the wheelchair in the house as his way to get around the house. And his appetite. He still wasn't that interested in eating and drinking.

I talked with the nurse in the morning about my concerns, and so then the conversation shifted to discharge tomorrow. But Nick did decide he wanted to get dressed today.

Physio came in the morning. We had a couple of tears getting out of bed. He was able to do it, but was still very guarded and afraid to stand or to take any steps. He was crying and saying his back hurt.

So we came up with a new plan. Morphine for pain, and then come back in 1 hour. Nick was happy with this decision. He had a bit of a rest for half that time, watching some cartoons. I gave him a time limit of resting before we could do something else.
Sitting at the side of the bed.

Yesterday he tolerated 15 minutes. So I wanted o see what he could do today. And we got the whole Lego done before Physio came back. Nick didn't complain about his back at all

When Physio came, Nick was willing to try to get out of bed.
It took a lot of persuation

And some tears that he couldn't do it

But once he started, he was able to take some steps. It took a lot of encouragement and some pain and tears. But he was able to get out the door.

And then we kept trying to get him to do more.
We went to the diamond in the floor in the hallway

And then if we were already in the hall, we were going to go to the playroom. And then Nick got to rest and play some games. We played a couple of games and then Nick started feeling better. Physio was going to come and see us again in the afternoon.

Nick wasn't ready to go back to our boring or room. So we did a puzzle and visited with another mom and her son (who we had visited a couple weeks ago)

Pretty soon it was time for lunch and time to head back.
Again, getting started was a little bit rough

But once he got moving he started feeling better (but he was tired)
(I told Nick he didn't have to smile for my pictures, to just make whatever face he feels)

Then Grandma Ridding came for a visit and he felt lots better!
He spent the whole time sitting up in bed and playing

And then he really wanted to sit up in the blue chair (and I sat in his bed)

He got some more morphine to prep for getting out of bed. And it worked! When physio came Nick asked if he could use his crutches! He tried really hard, and he did take some steps, but it hurt him.

When it was time for his walker, he was ready to go!
We didn't stop at the play room but kept going into the hall. Nick was picking up more speed as well

We needed to rest on the benches, and then after a break we worked on some more exercises.
Raising his knees and lifing his legs straight. And also some knee bends

Grandma was helping

Then we went back to the room for some bum lifts.
And we will continue with these 3 exercises until we are able to start a Grandview (hopefully next week)

Afterwards Nick didn't want to rest,  he really, really wanted to go downstairs and explore. So we borrowed a wheelchair and went to explore.
We went to the gift shop (and bought more lego) and then just walked around.
Nick wanted to go outside, so we went and sat outside for a bit

Nick wasn't tired and was feeling good. it made me feel really good about going home tomorrow.

When we got back in the room, Nick wanted to explore all of the things in our room that he wasn't able to see from his bed. It was fun seeing some of the nurses Nick has had, and the volunteer June who has come and stayed with him during the last couple of days, see him up and about.

Our next hurdle was our nightly routine. They brought me a portable commode with handles to help, and with some activities in front of him (yes more lego) he was ok. The only issue was that they only had one size of commode, so he kept slipping. And when he was slipping he would tense and it would hurt.
So I ended up padding all around him, with extra on  the back, and bulking on the side of the seat and I put a rolled up towel between his legs to keep his knees spread for more stability.
It worked pretty well

We phoned home and talked with Kyle and Katheryn. But I think everything I was worried about this morning was addressed during the day.
I wrote some questions on our board to ask in the morning, but our night nurse went through them all.
Including that he should have had a bath a couple of days ago (Day 3) which no one even remotely mentioned. But by this time it was too late, so we'll do it in the morning.

But I am thinking that Day 6 will be discharge day!
Here is our smile of the day

Walker-free time

Nickolas has been doing great with his walking. He wants to practice at least every day doing some independent stepping. We still need to remind him to get his balance in between steps, but he is still doing it.

 

We had to take 2 weeks off without the 'K' part of his braces because of 2 sores that weren't healing. And without the K he doesn't feel as stable (but he still wanted to try). But once we got them back on he was ready to get started again.

 

And then I thought...

What he really needs to help him get more stable in between his stepping is something he can hold on to. Like his crutches.

 

 

Nick was not very happy about this. He is afraid of his crutches and he says they make him fall. But now he has the ability to stand and remain standing and stepping without the crutches.

But of course his walker is easier for him

 

So we decided to have a walker-free Winter vacation.

It brought back memories of making Nick workout in his walker. And I told that to Nick. He used to cry and scream and not want to walk, and now he flies in his walker.

So now he has to learn and gain strength in his crutches. Because I know he can do it. I know he has the ability to walk with his crutches.

 

Nickolas was not very happy about it

 

But after a couple of days (and some falls and getting right back up) he was getting more comfortable using his crutches. He is still asking for his walker back, but there are places his crutches can go that his walker can't.

 

And after a week of walker-free days Nick is much more comfortable with his crutches. He is gaining confidence that he can do it!



 

We even duct-taped a cup to the side so that he can carry around toys or something.
And it opens up his options. When his walker can't fit, or when we have his wheelchair with us (like going downtown) and he wants to walk around, it gives him an option rather than crawl on the floor.

Will he be able to ditch the walker and walk only with crutches? I don't know. Probably not, but can he ditch crawling on the floor and walk with crutches? Definitely! (If and when he wants to)

First steps!

The day finally came.

The day that I knew would come once Nick gained confidence in his ability.

With his higher braces and some parent coaching to take it one step at a time, he did it! Independent steps!

Of course I had to get a video and make him do it again

I knew that he could do it!
Nick is so proud of himself as well. As long as he stops and stabilizes himself I think that he can keep going. But of course he gets excited and just wants to get there and just goes.

Being able to take these 5 steps opens up new things for Nick.
He can do a lot by reaching and walking and holding onto things, but by taking independent steps and being stable enough to take those steps opens up possibilities!

I am so excited!
6 years and his first independent steps!

Walking with crutches

This Family Day Nick decided to show off. I have been trying to get him to use his crutches.

I keep hearing how well he is doing with them, but I really wanted to see for myself. We keep getting his crutches sent home from school and Nick keeps stubbornly refusing to use them. So this family day I got them out and I had a mission.
Nick will show me how he can walk with them.
He is much more comfortable with them than he has been a month or so ago. But he is still nervous. He wouldn't try them unless I was behind him and holding him. So that is what I did... at first.
I stood behind him, holding his hips and he started walking. And I started pulling less and less pressure on his hips. He kept looking behind him and saying "mommy you have to hold me". We did a bit of walking, then turned around and walked back. I knew he was ready to do it without anyone holding him. So once we got everyone watching... the pressure is on... I pulled out my video camera

 

 And he did it! Family Day strikes again!

 At one time he does look back and say he wants someone to hold him. But he just kept on going. I'm not sure how functional he will be with crutches, but you have to start somewhere.
Even with the smaller base I think he found it was more supportive than the smaller canes we have for him. Now we need to continue to motivate Nick to want to walk with the canes and I think he will. We were all so proud of him!

I cane - part 2

 So they arrived.
Of course they were insanely too big. But we still tried them out.

I wasn't sure how much support Nick needs or if he would like them.
Nick talks through the whole video, and we can hear how he likes them...

 

"these are my new ones... the ones at speech therapy (physiotherapy) don't work, they don't work. Only these ones work... not the red ones, the blue ones. I like blue"

 

As he holds on with only one hand, and starts to dance!

So then we had to figure out how to adjust them to fit him.

 

So Kyle took some measurements, took the canes, cut them down, made new holes and got them fitted better.

Nick took one look at them, grabbed them and started to go!

This was about 1 minute into his first time using them like this!

 

 

I was so surprised and happy that he got moving so well that I didn't pay attention to anything else.

Look at him walk! And count and dance!

 

 

Now that we know he can move with them (alone and without adult assistance) this opens up a whole world for him.

It will not replace his walker, but it can go places the walker is too bulky to go.

It can attach to his wheelchair and go with us. So that when we are at the zoo or the park he has freedom (and off his knees)

 

 

I was so excited when we went to physiotherapy!

But when we were there he was leaning over the canes like an old man. Not very ergonomically correct. They have already had concerns about the pressure the canes will have on his wrists (which was why we had thought about the forearm crutches).

So I have to keep an eye on it.

And it is lousy that we are now done physiotherapy until school starts in September.

But it's only been a couple of days that we have had the canes.

 

I am so excited! He is so excited! Everyone is excited!

He can(e)!!!!!

A Holly Jolly Christmas Parties

The kids had a Christmas fun-filled weekend

(one of the down-sides of working shift work is that weekends are very valuable and usually jam-packed - especially when I worked 3 out of the 4 weekends before Christmas)

 

Saturday was following Bartley tradition by putting up the Bartley-family Christmas tree. For as long as I can remember the first Sunday of December was always set aside for Bartley Christmas. It was at my grandmothers and after she passed away it naturally transitioned to my parents.

 

The kids got into putting decorations on the Christmas tree - for about 5 minutes.
Just enough time for a photo-op.

And they thought the village I set up (another tradition) was put out just for them!

The next day we had another family tradition - the annual Ridding brunch.
Which thankfully was scheduled on the right weekend.
The family is huge! With 5 new babies born this year it is only getting bigger - so a hall was rented this year!

The kids thought it was great!

 

What do kids love to do?

Run around SUPERFAST!

And now they had the room to do it!

 

Nickolas spent almost 2 straight hours on his feet!
This was waaay more than just showing off

This was keeping up, having stamina and playing at the same level!

Some words I never would have thought I'd say a couple of years ago...
"Nickolas! don't run over your cousin!"

Katheryn wanted me to find a limbo stick!

 

And we had some froggy games

 

Some crafts... (Trying to stay in the lines)

 

And Katheryn found that the floor was nice a slippery which is perfect for sliding!

She kept wanting me to take her picture sliding

 

Since the kids were dressed up super-cute (I just LOVE that tie) and there was a Christmas tree, I thought I'd try for a cute kid picture (even though I already have my Christmas-tree pictures)

 By the end of the weekend Nick was so tuckered out, he needed help holding his head up to play his leap-pad games