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!

Sunday, August 28, 2011

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!

Thursday, August 25, 2011

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!)

Saturday, August 6, 2011

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!

Thursday, August 4, 2011

More Walker - getting comfy!

I am so glad that I pushed so hard for this thing!
I am so glad that I knew it was the right time, even if I wasn't quite sure he was ready for the walker now, I still wanted it to get him used to it.
Becasue I thought it would take weeks of him getting used to it.
But he knows exactly what he is supposed to be doing with it.

We got the walker on Kyle's birthday (July 25th) and took it to the cottage for our family reunion (July 30-Aug 1). And by the end of the weekend, when you put Nick into the walker he starts moving his feet into steps.

Not actually walking, not weightbearing and moving the walker - but he'll hold your hands and pull himself and make the stepping motions. I think every day he is getting better and better!
Katheryn loves helping him to move his feet and she lies on the ground and pulls him over her! They both think it's great! Katheryn might not enjoy it so much when he actually starts getting it moving and walks over her!

Inside or outside we've been putting Nick in it. Sometimes it's for only a couple of minutes and then he fusses and wants out, and sometimes he'll be in it for a while. We go between using it when he's just staying still. And helping him to move, but telling him to step, and when he makes the step (one foot and then the other) we move the walker.

I still can't beleive how quickly he's picked it up! As soon as he's in it, he's stepping and wanting us to pull/push him. So he knows the motions, now it's using weight and motions to make movement!
He actually did make it move this week. And for what? Trying to reach the open door because he wanted out, he was reaching and moved it about 3cm - boy was he surprised!

When we were packing up the van to go to the cottage Kyle hadn't realized that I wanted to take the walker - the bulky, does not fold down, weighs 20lbs, pink walker. I told him that taking the walker was not negotiable. If I had to leave the tent and take the walker, I would.
We did get it packed. And we were able to have a tent over our heads!