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!

Tuesday, January 31, 2012

All about Wheels

So I said the last post that we didn't have anything that exciting in our house. Well we did buy a new van!

Kyle and I were very specific about what we wanted. We wanted a Grand Caravan, 2 rows of stow and go seats and a built in DVD system. And of course a good price. I never realized how small my old van is, until we got all of our stuff in this one and realized we still had lots of room. We didn't really get a good choice of colour. This one may look black, but the colour is actually blackberry. I'm told it looks purple when it's in direct sun - we'll see!
We got a number of different options on it as well, so I'm still trying to figure it all out.
But it did come with Sirius Radio (which I have discovered has a Broadway station - and I'm hooked)

But that wasn't the only set of wheels that we purchased this week!
We (finally) put in the order for Nick's wheelchair!

I'm pretty sure it is the Quickie Zippie GS. I say pretty sure, because to be honest, I was a little lost about everything.

We got to trial a lighter weight rigid frame chair. I did not get a chance to take any pictures, but just picture a little blond boy in a wheelchair screaming and saying 'no, no, no' while pointing to his loaner chair.

I was disappointed because I really pushed to try the lighter rigid frame chair. But Nick is the one in it, he gets to pick. But lifting the 'lighter' frame and then the 'heavier' frame, really was only a 3-5lb difference in weight.
Add that to the fact that I had gotten used to some of the features of our loaner - namely the arms that will lift up and out of the way, instead of just come off and need to be carried. Also a stroller handle to help Kyle. These options didn't come with the other chair.
So in the end I was happy with Nick's choice too.
If you play the video, don't put the volume loud - there is a kid crying in the background that I didn't notice until I got to the computer

So that matter settled, Bill (our equipment guy) and Lori (our not OT) got down to business. Out came their notebooks and back and forth they talked about different options and measurements while I just stood back and wondered what I was supposed to do. (But not in a bad way).
Then it was my turn for some choices

Our loaner is 'blue opal' and I didn't want that, it's a little plain. I wanted something brighter.
In the end I brought the colours home for Kyle to see what he liked. Luckily we all liked the same 3 colours.
Candy Blue, Candy Red and Copper.

This is a colour that Nick is going to have to like and live with for 5 years.
I was a little nervous.

But we decided on nice and bright and Orange!
It will be here in 4-6 weeks!
I never thought I would be excited for our own wheelchair. And when they talk about wheelchairs and buses for school I still get a bit queasy, but right now I am excited for Nick to get his own wheels!!!

Sunday, January 29, 2012

Clinic Time

We haven't been that eventful in the Ridding house! Seems like I haven't blogged in ages!
We had our spina bifida clinic again on Friday.
Pretty unexciting - which is what I expected. Always a good thing.

We had actually been at Bloorview on Thursday to deal with a red spot that Nick had on his heal.
That red spot worried me. Nick's foot had been coming out of his AFO and Kyle had noticed a dime sized red spot on Nick's heal on the weekend. So no more AFO's, no standing, no walking and waiting to be able to see orthodics. But they hollowed out a bit more of the heal, added some padding and away we go!

Today was an actual clinic day. All good news.
Urology/nursing - kidney/bladder ultrasound, all clear, no problems, continue as we are doing, see us in 6-9 months
Physio assessment - all good, he is doing amazing
Ortho - no issues, all clear for 1 year
The only thing was that Nick's scar makes it hard to tell if his spine is straight or not just by looking. He also has a part of the scar that got infected and is all indented, the part that runs along his side and isn't red, it is actually indented while the rest is pretty flat. (Out of Nick's scar, this is part I hate the most, but what can you do?).
In the end, they think that yes, his spine is straight, but it's something to pay attention to.

The best thing about the spina bifida clinic was that I got to spend it with Shayna and her son Gage - who is absolutely adorable!!! (You might remember Gage as the baby who was born last May, and I got to be there).
Instead of sitting around waiting for everyone to come and see you, Shayna and I got to wait together and people pretty much just found us.
That was great!
I think every clinic visit should be like that!
We talked about getting a picture of the boys together but didn't get a chance to.

We had some time for Nick to play with the fish tank.
I have a video of Nick (slowly) wheeling his chair around the fish tank, but it won't load. So I'll try to load it for another post.
Nick likes the fish so much I thought it would be good incentive for him to stand at (still working on getting him to like simple standing at things). Needless to say Nick was less than impressed about standing at the fishies.

Once he got his balance and realized that no, he wasn't going to fall he got a little more brave with the standing. (Sorry for the lousy pictures, my camera's flash stopped working - something about not liking that last fall to the floor or something, electronics these days!).

 The clinic is divided into 2 half days. The morning is when you see the nurse, physiotherapy and get necessary ultrasounds. Then there is lunch, the physicians get the opportunities to review all of the tests and assessments. In the afternoon we get to visit with the doctors, get the results, get the plans and go from there.

At the end of all of this Nick and I still had one more exciting meeting (never thought I'd say that!). But I'm going to leave that for a new post!

Thursday, January 26, 2012

Tuesday, January 17, 2012

More Walking

How better to start the new year than trying out some more walkers.
I think this is walker variation #4.
And it's a forward one. A front walker has been suggested a couple of times, but I was always hesitant because I heard that it was easier to use than the reverse one. And also that it promotes him sticking his bum out instead of standing up straight.
But I was told (and finally convinced) that yes it is easier, but Nick cheats when he is in the reverse one (he likes to rest his bum against the back and not work as hard. And he can't do this.
Also his posture is good and we aren't worried about him sticking his bum out too much. As well, we wanted to get away from the big forearm supports. Because this also lets him cheat but taking weight in his arms instead of using his core.

At first Nick was very hesitant. He was unsure and afraid and just didn't want anything to do with it.
That's fine, so we went on with some new stuff.
Of course he had to walk the whole way without the walker (just with our hands).

We went up these stairs, to a slide (this has 3 sides - low stairs, regular stairs and in the middle a slide). We had Katheryn with us - Kyle and I both went - and she had a great time going down that slide!

For some reason neither of us thought about taking pictures of Nick going UP the stairs. But he wanted the hold the handles (they were a little far apart for him) and step, step, step. Sometimes he'd get ahead of himself. But we were always there.

One time after the slide (when I was out of the room of course) Nick crawled right up to the walker and wanted to walk in it. OK!
I think he likes this one more than the other one.

Of course enough to clown around in it!

And of course I'll leave the best news for last (I have difficulty believing it to begin with).
Kim told us that she thinks that Nick will be a walker, but that she thinks that he will eventually be able to walk without any supports, just his AFO's!
Nick has done so much in the last 6 months I can't believe it! So I don't think that I showed appropriate enthusiasm, but I'm still not wanting to get my hopes up by anticipating what he can do. I want to wait to see what he will show me he wants to do!
But I anticipate it to be an exciting year!

Sunday, January 15, 2012

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!

Friday, January 13, 2012

A big purchase

We make a very exciting purchase for Nick this week!

I've decided that it is time to start to cath Nick on the potty.
This will hopefully transition into a routine that will get him out of diapers.

After the disastrous Tweed experience last month I thought it was time to get off the change table.
I'd tried him on the potty a couple of months ago, but Nick's balance was still off and I just couldn't maneuver everything and couldn't figure out the proper logistics. I did talk to OT in June about something to help, but what we were shown was not what I had in mind at all. The flamingo toilet system - it was big and bulky and a piece of equipment I didn't think we needed.
I'm still on the lookout for something very simple - but somehow I can't find it (a little kid toilet set with handles).

But while we are at home, Nick now has his very own potty!
Except that this picture is of him on Katheryn's potty - oops. Nick picked out the cars potty - complete with a revving engine noise!
We've been cathing him on it all this week - so far so good!

Wednesday, January 11, 2012

Physiotherapy woes and wonders

You know when you have a blog post just waiting to burst forward. You write the whole thing in your head and know exactly what you are going to say.
I had this post all ready.
All about our physiotherapy woes.
I am currently pissed off at our local children's centre. Just like I was pissed off last year and other times. Because I feel we are being pushed around and not getting the care that we need.
Because we are still waiting to be picked up (again) from Grandview
Becase we had 2 blocks of therapy last year.
2 blocks!!! In 1 year.
That is 2 blocks of 7 weeks, and another 3 sessions to adjust the walker - so 17 sessions of physio in 52 weeks!

And this is what we are supposed to use to see that Nickolas is reaching his potential and getting the care he needs.

This is actually our government therapy. We have used insurance (a whole $500 in insurance - which we reached pretty quickly) to top up Nick's physio. We actually had 4 different physiotherapists working with Nickolas and I this past year. Melissa - who we saw Feb-March (block 1); Colleen that we see privately starting in May, Megan who we started with in July-August (block 2) and worked with the walker with us through the fall until she went off on maternity leave, and Doreen, we saw in the fall privately and who is also a osteopath and physiotherapist.
If you are counting (which I am) we paid privately for another 13 sessions. On top of our conductive education (not traditional physiotherapy - but we get working) So that's another 20 sessions.

At the spina bifida clinic we have even more physiotherapists! We have Kim our original physiotherapist, who has been off for 6 months and came back in October, and another PT who we never did therapy with, but see at baby group and clinic. She was the one who said that Nick functions at a L3 level.

Sounds great for continuing care.
Especially for a child that does not warm up to therapy very well.
In fact, he usually screams his way through therapy sessions. I've blogged about it before.
A child who has so much potential, but doesn't want to show it until he is ready.

We have not been recreating the wheel at every session.
When we were all of a sudden dumped by PT in March I was floundering. We were not left with a plan, we didn't have goals, we didn't even have any dates about when we would get picked up again. Just sometime in May (it was really July). I didn't want that to happen again
We started private physio in May. Nick screamed and cried and carried on through the whole thing - but he worked. And we had a plan, we had goals and written objectives.

In July I had a goal. I had an objective. I wanted a walker. I didn't care what I had to do, or what Nick had to do to get us a walker. But I wanted one. So once we met with Megan in July we started working on getting him a walker.
And we had one to take home on one of our last physio sessions at the end of July. We have since gone back a couple of times just for different walker things. I took off all of the supports at the end of August because I felt he didn't need them. And in September we changed out this walker for another one I purchased, and then for another loaner in October.
OK we might have a little bit of walker overload.

I just feel that we are being tossed aside and getting sub-standard, nonconsistent, noncontinuous care. And I don't really know what to do about it.

Well Kim to the rescue!
At baby group this month Kim offered to pick us up again for a block!
I am so excited. Kim is great, she is super experienced with spina bifida and Nick does know her. He needs a little bit of a warming up period. I am so excited about this. Finally to have weekly physiotherapy again (after 6 months) instead of a week here and there, espeically because we are on a break from our conductive education.
So we start again on lucky Friday the 13th! And we'll be moving forward, with the right equipment and support!

Monday, January 9, 2012

Class Clown

Nick loves being silly and clowning around.

Whenever we ask him about colours, he says that every colour is blue.
He knows his colours, he doesn't think that every colour is blue. He just likes saying it.

Last week I asked him what colour something was. He says yellow, looks at me with this funny grin then says blue! Blue!

This picture doesn't adequately show the funny-devil grin, but it's the closest I have.

Today he was playing with Kyle on a farm animal mat.
What is this? Nick says dog, cat...
"Good Nick! point to the cow", he points.
"OK, what is this?"
He looks at Kyle, goofy grin.
"No Nick, it's not a dog, it's a cow."
Nick what is this? (pointing to the pig)
He thinks it hilarious!

He's been doing it with everything. Plate, no it's a bowl; plate! Plate!
Putting his socks on his head, or his knee or his hand.

Silliness, but it makes us all laugh.
I think this boy is definitely going to be the class clown.

Tuesday, January 3, 2012

Just because it is today

Welcome 2012
Because it is today, someone decided to have a little 2 year old tantrum!

Because it is today, Katheryn wanted to play with some of her favorite new presents

Because it is today, we decided to enjoy a picnic
(notice Nick's little devil grin!)

Just because it is today we stood at the window and waited for some snow

It's too cold for snow ;)

It's just today. Any day.

Sunday, January 1, 2012

Good-bye 2011

It's amazing how far we have come!

Good-bye 2011.
You gave us a year of worry and excitement, you showed us triumph and tears.
You gave us miracles and you left us with only memories.
I don't know if I am happy you are gone or glad that you brought us so much.

I gave you a family who was waiting to show off what we could do,
And you gave me shunt scares and standing, worry and waiting,
You brought us equipment and encouragement,
You gave us a 3 year old, and a 2 year old (both great years by the way),
You helped us settle into working life, scheduling and appointments,
You tried to make me patient and show me what is worth waiting for,
You showed us what patience will produce and that timelines don't matter,
You gave us time for family and memories and fun.

Thank you for the Love, Laughter and Living!

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There were so many pictures that I wanted to include!

And I'm sure I'm forgetting some pivotal moment in my recollection of the year, but I don't know what it is - or don't want to recall it. Hope you enjoyed our year in review and I look forward to what 2012 will bring us (except for the registering for kindergarten part).