The story of a Walker

Now, I am not talking about the equipment. I am talking about the boy. The boy who will be a walker. And what I am doing to make that happen.

I fought so hard to get Nick that walker. And we got it. 6 weeks ago we got one to take home.
It has all of the supports for him. A chest strap, a saddle support.
But...
He likes to just hang there (OK this picture was from the first day we brought it home, but he still hangs when he doesn't want to stand).

And I really liked how he picked up how to move his feet. But in a walker, you really need to stay on your feet too. So I started thinking that this actually has too much support!

I did talk to a couple of different physiotherapists about a different type of walker. A lighter one, but everyone felt that this is the one that he needs now. That he needs the support.

Sure, he needs the support now. But what about in 2 - 3 months. You know, the 2 - 3 months it will take for the walker to arrive after we order it. I don't want to be stuck with something he's outgrown. When I really feel in my gut that we should be looking at something lighter. Like the Kaye walker.
Pretty much when I mention walkers by name, I'm told that there are so many different walkers that they don't know the names of all of them!
But I've done my research, I've looked at what other kids have started with, have used. And why can these kids start with such a light weight one and Nick can't? And yes I know that all kids are different.
But I really think that Nick has it in him!

These past 2 weeks I've seen Nick doing some amazing things. Things that he likes to do!
Including walking. Walking holding onto my hands. But weight bearing and moving his feet.
I don't have a video/picture because I'm there with him.

OK, so imagine this:
I am crouching down in front of Nick. He is standing in front of me. I have my hands out and strong (sometimes balanced on my knees). He holds onto my hands. We shift his weight together...
And he walks.
He lifts his leg and brings it forward and then moves the other one.
He prefers moving his left leg (his right side is stronger).
But he walks!

So, now the question is - how can he do this with me holding onto his hands - not holding his chest or legs or bum. But taking his weight through his forearms/hands. Why can't he use a walker to do this and not me. He obviously has the ability and the desire.
He LOVES doing this and walking like this. (And I love showing it off at every opportunity!)

So we decided to make some changes to his walker.

So we took out the pelvic support. So he can't sit when he's tired. And used a hula hoop to try to keep him straight.
But he still slouched.
I really just wanted to get my hands on a light walker (without supports) and see what he could do!

Oh! Look at that!

We tried it out in our conductive education class (they had one hanging around). We tried it forward facing to try to get his posture straighter.

And if you look at the video he is actually standing/weight bearing and moving his feet/legs!

So when we got home I decided to play around with out walker some more. And just take out ALL of the support. Just some handle bars (which is actually what held the saddle part up, but I adjusted it).

We only did it last night, so we are still working on it. But he'll stand and move that left foot to step. But we are trying to provide the right encouragement (like Kyle and Katheryn standing in front of him making funny faces!)

And even his posture is not horrible.

So we are going to work on it for another week or so. And have something to bring to PT when we see her in 2 weeks.
And I think I'm going to go with my gut!

Learning and Working!

So we've finished 2 weeks of Conductive Education - and we are hooked!
Absolutely hooked!

Considering the amount of work that Nickolas did in the last 2 weeks (15 hours a week) he tolerated everything amazingly! He worked and he learned! He learned stories and songs. He learned that he has a whole bunch of people cheering him on. He learned about colours and weather, he learned he has choices that he needs to make.
Nick worked on standing, cruising, kneeling, stepping, kicking, kneeling, balancing. There is probably more, I just can't remember it all!

Here is playing with the oatmeal (we read Goldilocks and the 3 Bears). I had to really hold back from saying 'he doesn't feel that' or 'he can't move that'. Because won't he just show off something to prove me wrong!

Everything we did was meant to do something! But also be fun.
lets sit (on a bouncy ball) and listen to a story, sing a song, follow a routine.
Nick really hated this ball the first couple of times. He needed so much support. On Thursday he was able to sit on it all by himself! Sure mommy was sitting right behind him, ready to catch him, but he balanced himself!

Transitioning was important. No more lifting and carrying. When it's time to get up or over or down, he does it himself. We just offer assistance - boxes, or support or encouragement. So he knows that he has to do it himself.

And when there is something we want him working on, we want to make sure that it is fun!
What is more fun that kneeling up and popping bubbles?! Anyone?

And look at these cool weights!

One thing that we are working on is body awareness. So Nick has a ball between his legs and we pass it up to his hands, or kick is away or do something fun with it!

 This one was a bit of a bust. It was the end of the day and Nick would have NONE of it! These are barbie clothes handing down for Nick to grab. (This story was the elves and the shoemaker)

Most days we had a craft that we do (all sensory) that we get to take home. Nick and I got to decorate the Billy Goat Gruff!

And Oops! It falls down and we need to go and pick it up!

This is Lindsay - and Nick was in Love!

This was really one of my favorite things to do. Playing soccer with Zach!
It might look like I'm holding him - but I'm not really. Nick would get the ball and actually kick it to Zach! That interaction, that peer-ship, that looking and seeing other kids who are doing the same thing you are doing!

We've signed up the fall semester where we will go just once a week.
I wish we could do more, but it's expensive (OHIP doesn't pay, our insurance isn't covering it and we are looking at some different funding options, but nothing has come through yet). And we are also trying to fit the time into our schedule.

Some good/great news!

We start our new fall session in October. There is room for more kids. They are willing/wanting to make a spina bifida group! With focus on spina bifida related strengths/weaknesses.
I am SO excited to start again! (Except I was very happy to sleep in today).

So if you are in Ontario and would just like to investigate the possiblity of joining us (a consult) it is all through the March of Dimes. Mhairi is our contact. The more the merrier!

Appointments, appointments... and ... wait for it... more appointments!

Our summer has been very, very busy!
I feel like I've been a little lax on the updating. Sure I've posted a bit, but not as much about what we are doing. Why? Pretty much because we are doing it!

We started physiotherapy at Grandview in June.
We continue to see Katie our infant development worker.
We continued with our private physio.
We had speach therapy with Katheryn
We had an MRI at Sick Kids
We followed up with neurosurgery at Sick Kids
We saw a developmental peditrician as part of a research study
We saw our regular pediatrician for a weight update (27lbs 9 oz)
We had the spina bifida clinic (split into 2 days)
We had the Conductive Education consult
And finished the summer with 2 weeks of intensive Conductive Education

We also had trips to the zoo, a number of weekends up at the cottage, a family reunion and a whole lot of birthdays (and 1 birth-day)! Oh, and I continued to work part time, luckily I have a great work partner and we were able to schedule around each other well. The joy of 12 hour shifts is that I work less actual days (or nights), you are just wiped out when they are done.

When I look at my calender of July - I have 5 blank days. 5!!! And August was the same!
Kyle claims I bring it on myself - and I guess I do.

But its summer time! Its the time to fill the days with fun things to do when you have time off. And fill the rest of the time with what you need to do!

At the end of the summer (OK I know its just the end of August and not actually the end, end of summer) I want to look back (and have the kids look back) and think that they had alot of fun with parks and zoos and lakes and cottages. And at the same time we have Nick in tip-top shape - completely checked out.
Neurosurgery cleared us for 1 year!
Spina Bifida clinic cleared us for 6 months.
We are nearing the end of our block for Grandview Physio. (and we have a borrowed walker for now, and will order one at our next visit)

We are investigating some other therapies. We have our private physiotherapist and a second private physiotherapist that is also an osteopath (and fantastic!) and we are going to continue the conductive education (weekly). So September is looking slightly less busy, but still productive. And some recreation activities.

I'm amazed at how productive and great Nick is doing!
In May Nick was not transferring lying to sitting. And now!
Pulling himself up to stand, climbing over a single step. Kneeling really, really well. Kicking up, down, side to side.

He has a couple of words too (weird words, and he'll say them for a couple of days and not repeat them). And when we try to get him to say something - he gives me a look, like he's saying - Ha! You can't make me and I will grace you with some words when I feel good and ready!

Hugs all around!

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!)

Family, family and more family!

It was time for our annual family reunion!

A family tradition for the last 6 or 7 years - or is it more?

Everyone goes to the cottage for the long weekend

It's an annual event where we get to see family we might not have seen for a year,

it's where I announced I was pregnant with Katheryn,

where we discussed Nick's spina bifida diagnosis

Where we can catch up on life by the lake, by the fire, around the dinner table.

16 adults, 7 children and 1 teenager,

add in 5 dogs, 3 trailers, 4 tents and 1 cottage...

And we have a PAR-TY!

It wasn't all fun and play!

I had Nick working and showing off everything he can do.

Lots of standing!

Some crawling (with his new knee pads!) 

And being at eye level with his second cousins!

Katheryn got to play with the girls

We got to camp for the first time!

Kyle got us something called a cabin tent. It is huge! (this picture is in the entry way)

And the fresh air gave us all a chance to relax! 

Sometimes it's tiring with so much to do!

And of course there was LOTS of good food! 

Even some fireworks farther down the lake!

The camping may have been a little rough that first night

(See how the kids had their own room! This tent was AWESOME!)

But Katheryn got everyone happy again!

The concept of bed-time was a little lax  

And some people paid for it during the daylight hours!

I went into the cottage for something and found him like this!

Out Cold

 And Nick got to enjoy the water!

Even if he did try to drown his poor Auntie Laura!

But thanks for going under to keep my little boy above water!

Katheryn loved being near the water, but this was about as deep as she went!

It was a wonderful, relaxing weekend with family. The weather was beautiful, the company divine and we all got some much needed R&R. Until the serious appointments start again for August!