Day 4 - Out of bed

It was Monday, which meant that we had some great things planned for today!

Physio was going to be coming today, the dressing was going to be coming off and we were going to be one step closer to discharge. But first there had to be some eating and drinking so that we could change the IV over to a saline lock.
Nick is not the best drinker at any time, so we really had to work on drinking. But after breakfast that pesky IV line was gone!

I also put up Nick's All About Me poster he had made for school last week. I thought it was perfect to show all about Nick

To help to prepare  for our  first goal, getting out of bed, I wanted to get Nick propped all the way up. So it was time to pull out the lego. At first his back was hurting becasue he was up higher than before. But pretty soon he was distrated by that

And then I had him up at a full 90 degrees, and had him reaching and leaning forward.

He didn't have any problem leaning forward.

That got us all ready for the next step!
Perfectly timed, physiotherapy and occupational therapy came to see him. There wasn't so much from an OT perspective, he is still guarding his IV hand, but he is moving it and using it (and putting together lego with it)

But we got him sitting at the side of the bed. The transition was sore for him at first, but if he could get past that part he was able to sit and help us swing his legs over the side of the bed.
We did try to stand at this time (which is why his braces are on), but it was too fast and he had too much pain. So we sat back down and PT was going to come back and we were going to pre-medicate so we could get more work done.
I did have a quick vision of going home tomorrow if he could stand, but it was just too fast for him

While we waited, I pulled the lego back out. He could tolerate about 15 minutes of sitting like this before having to sit back down.

But over the course of the day we got our finished product!

 Nick also had a special visitor. Jenna, another adult with spina bifida came for a visit. She knows 5C very well and has had multiple surgeries as a child and had lots of support for Nick.
He was tired from all of the work he had done so far, but he did get a visit before passing out.

But he looked so cute sleeping

Grandma and Papa Bartley came for a visit too

They were here when physio came back in the afternoon. We got him standing up, it still hurt, but not as much in the morning, and he was able to sit at the side of the bed easier as well.

But the standing was hard. He had difficult standing up straight and kept hunching over and leaning his bum. I guess that is what happens when you haven't been out of bed for 5 days!

We also did a little bit of walking around the room. I'm not really sure why he grabbed the walker like this.

He needed a lot of support, and it was more shuffling his feet while she was holding him upright, than actually walking, but it is a start. And I have to keep telling myself that. It is a start.
My heart broke a little bit seeing how much he was struggling to walk. But I am sure that tomorrow will be better, and the day after and the day after. One step at a time, for real.

Nick hadn't been eating very well, and threw up the little lunch he had, so we gave him some zofran, which settled him enough that he snacked.

And this is how he ate dinner.

His dressing came off this morning as well. His incision is looking good. But it is big (about 3") And he is very worried someone is going to touch it, but with a little distraction he was actually really good with the dressing coming off. 

Sorry if it grosses anyone out, but it looks good. Now that the dressing is off he isn't really bothered by it.

Every day he is getting better. Tomorrow I am hoping he will be able to stand with less pain and take independent steps in his walker.
BUt here is his smile of the day

And this is how he is fighting sleep at 1030 at night (must be that nap recharged him!)

New Braces!!!

It was time for new braces again!

I asked for another orthodics appointment in May because I felt that they just weren't high enough any more. After our appointment in December when they said he still had growth, I wasn't sure if I had to make my case or not. But there wasn't any problem this time.

 

As usual I came all prepared with what design I... I mean Nick, wanted.

He has been on a Teenage Mutant Ninja Turtle kick lately, especially Michaelangelo ("my favorite colour") so I found a whole bunch of different options and Nick got to pick what he wanted.

 

There was no question about what colour to do the background (after the while background of our backyardigan braces I also specify something)
They came out fantastic!

Nick started showing off as soon as they were on him.
He stood there (bum not touching), and stood there... and stood there....

And he is standing so much straighter!

We have a wearing schedule right now (1 hour on, 1 hour off, then 2 hours on, 2 hours off) for a bit until he gets used to them.

Nick wanted a picture of all of his old braces

I think he has grown a bit!

Standing up straight

It's all about standing today!

One of the that came out of the NDT classes was that Nickolas is leaning forward in his walker. And we don't want him to lean, we want him to stand up straight when he walks.

On my ever growing list of things to follow up on...

 Have the walker adjusted so that he stands farther up, so that he doesn't have to reach farther forward.
Luckily when we were at the bike fair yesterday we got Bill from Durham Medical to make the adjustments (no problem, he had all the tools there - AND he made the adjustments to Nick's wheelchair as well!)

So much better!

Nick is doing great standing up straight. His favorite thing to do is to balance against the couch, the tilt forward so he is standing all by himself!
7 seconds!

 Who knew that this doll house would have been so great at getting Nickolas standing, and playing together with his sister.

Katheryn of course is working on her balance as well!

One Step Back...

Nickolas has been doing so well with is walking. Looking at him walking with those canes still amazes me! I’ve been showing everyone the videos. And when we are at home we can’t keep him off his feet! He stands and climbs over everything!

We had some issues with his AFOs in January, one of his braces was slipping off and he had a dime sized red spot on his heel. We noticed it on a weeked, So we kept them off until we could see his orthodics guy during the week. Luckily we were able to get in and see him quickly.
I can't find my post - so I guess I didn't blog about it.

So Nickolas got a break (in January) from standing and walking until we could get it worked out.

It happened again. Saturday morning he has a nickel sized red spot on his heel – same place. Same issue. This week his AFO has been slipping off. We look at his feet every night while he’s on the potty, but it wasn’t unitl Saturday morning that we noticed it.

Luckily we are able to see orthodics Monday morning (love people who answer emails on Saturdays while they are off on vacation!) So no AFOs, no walking in the walker.

I do not say no standing – because Nickolas is taking that in his own hands – or feet.

He won’t stay off them!

Nickolas has been standing without his braces for a while – usually in the bathtub of all places. His ankles are obviously weak and it really makes me cringe, but he can get up there and wants to get up.
This was taken last fall right before a bath.

He still goes over on his ankles, and it still makes me cringe – but I can’t force him to stay on the floor.

It’s hard when Nickolas is asking for his shoes and I can’t put them on him!

Standing on his own two feet

Nickolas is showing off some new skills.
We've been working on getting Nick to stand with us supporting above his knees (we started in January at his hips).
But now he decided to take it to a whole new level!

Nick started to crawl over to me when I'm sitting on the floor. Then he pulls himself up onto his feet and falls down. Then one day he let go, and just stood there for a couple of seconds!
He did this a couple of times before I realized what he was doing.

So this week I set up a video.
You have to watch the whole thing to get him standing by himself.

I think Nick has also learned the joy of dancing!

Finally! Some Winter!

I am really going to regret this title in a month or so.
But for now, it is the middle of January and we finally had some snow stay down in the backyard. (And already I hear people complaining about the cold).
I'm really sorry for all the pictures being sideways - it's driving me CRAZY and 3 hours later I'm just posting!

But Katheryn loves the snow, so we went out in the backyard to run around and play.
First there was the production of making sure that everyone was warm enough.

And we might as well get Nick up and standing while we are at it!
Nick is gaining so much confidence on his feet now!

Katheryn was all ready and waiting for Nick and I to finish getting dressed for the cold. Katheryn is wearing a scarf that still has my name sewn into it from when I was a little girl!

And Nick wanted to make sure that we didn't forget to put his new boots on (they light up).

Then we were out!

Katheryn has a house in the backyard that they gravitate to. All Nick wanted to do was ring the doorbell and get inside. BUT we have stuff inside and I can't fit inside like I did in the fall.
So I'm holding onto Nick's arm or shoulder or something to try to get him to move around in the little house. I wasn't always successful and Nick had 2 spills  - luckily he just seemed to shrug it off. I don't have any pictures because I just don't have that many hands!

And Katheryn was serving some snow-hamburgers.

But the kids had alot of fun in the snow, and I got cold long before they were ready to go in!

Conductive Education

We have been doing our 2 week block of intensive conductive education at March of Dimes in Toronto. March of Dimes only runs in Toronto and Halifax - boy am I glad we live outside of Toronto! (It takes about 80 minutes to get to March of Dimes in the morning).

It is 3 hours a day, Monday to Friday. In our group is 3 other kids and moms, and we have 2-4 conductors with us. Each of the other kids (I think) has cerebral palsy (CP). Nick is the first one they have, who has SB.

It's a little bit hard to describe what we do. At one point is seems so, so very simple. But they get him working and we get results! Everything has a purpose, everything is connected with what we do through the day.
We have a new perspective, a new way to look at things, to approach things and to do things.

The whole thing is more of a holistic perspective. Looking at the whole picture instead of just looking at individual tasks. And educational. Colours, numbers, choices. Being aware of the environment and expected to answer (or put forth an effort) questions.
Our first day I actually caught myself saying "Oh he can't do that" and then he did! It was kicking his leg out sideways (abduction) to kick a ball.
We have really been making him aware of his body, his legs and his feet. And have him realize that he actually has control over them. Isolating them as well, only moving one leg and keeping the other one straight.

What amazing things I have seen Nick do this week!
- walk with parallel bars (with some assistance - but he's doing ALOT)
- stand by himself against the wall
- cruise, cruise and more cruise (with some assistance)
- kicking a ball - kicking it forward, to the side
- kicking a ball back and forth to a friend (on the parallel bars)
- bringing a ball from his feet up to his hands

And some things he's started to do at home:
- climb over our step at home
- pull to stand (that was Saturday)

In class, we've also been crawling and more cruising, eating snacks and reading stories.

We start the morning talking about the day and colours and songs. Each child has a name on a paper and will react (in different ways) to questions, choices. Nick is still working on the language part, he's shy and is much more interested in looking and watching the other kids than answering questions and making choices.

But at home he's saying more words (he said BATH today!)

And today (Thursday) he was starting to come out of his shell and make more sounds, and more effort at sounds.

If you look at this table that Nick is on - it's called a pith. The slats allow him to hold onto something, but it also lets him feel on 3 sides of his leg. It's not just flat, but more textured. We use it for alot of things. it's a seat, it's a table, its where we eat, and what we walk around. Each child also has a pith on either side of us.

(I have not asked the other parents if I can include their kids in this blog, but I'm hoping to talk more about our experience next week). And a big part of the experience is also the interaction between Nick and the other kids. Especially one little boy.

The days activities revolve around a story. The Three Little Pigs were the first 2 days. We built houses out of bricks (lego), sticks (popsicle sticks) and straw (dried tree needles). A piggy puppet tried to get under the bridge (his bum). Nick had to lean up and down to get the piggy that was under his bed. And we painted mud on piggies with his toes and feet!

Nick is enjoying himself too. Yes he works hard (and today - Thursday was a little rough), but he doesn't cry or carry on as much as he does during traditional physio. Yes there are some things he doesn't like - usually the hand/arm games or activities. Where he needs to lie down, and right when he gets into what we are doing, we are done.

 But usually once we are up again, he's pretty happy.

The 3 hours are also structured, with circle time, pith time, snack time, potty time and then our 'big activity' time. And the story that is started at the beginning continues through the whole day. Then it's time to say bye-bye to all of our friends. Until tomorrow!

When we get home (and after Nick gets a little bit of a nap) it was time to show off what we discovered that Nick can do! Because it's not something that he learned to do in a couple of days - he already  had the ability, we just didn't realize it (Nick or us!)