A Journey with Love and Laughs

More Zoo!

2012-02-12T09:47:00.001-05:00

The Toronto zoo is one of my favorite places to take the kids.

We have a season pass, and I could fill my blog with all the trips to the zoo!
I always think that I won't take very many pictures this time around. And then I end up just click, click, clicking, and somehow I took 140 pictures!

I like taking pictures of the animals
I love taking pictures of the kids
And I really love taking pictures of the awe of the kids looking at the animals.

This time around we went for something special.

The new baby polar bear

It was pretty cute, but Nick had a hard time getting close to it in his wheelchair. And people crowded around the area to get close. Katheryn was more interested in the movie about the polar bear that was playing in the tv nearby anways. But the bear was pretty cute!

The animals were pretty active. The polar bears and wolves were actually running around.
So we got to see alot of action when we were going through our polar bear route.

We always start with the polar bears, and then go through our regular routine: Polar bear, pizza, penguins.

The pizza and penguins are at the top of a hill.
So we even get our exercise!

The pizza revives everyone enough to be silly!
(I LOVE this picture)

And Katheryn gets a chance to climb on some rocks. Climbing is her favorite!

Photo op time!

It was too cold outside for the penguins so they were inside. But Katheryn and Nick didn't really care.
They pressed themselves up right against the glass to get as close as they could.

See those 2 penuins looking at the wall.

When I wasn't taking pictures the light was flashing off the lens and projecting against the wall. And like cats with a lazer pointer...
The penguins kept watching the wall and chasing the light (I didn't realize I was doing it). I couldn't figure out why the 2 penguins were looking at the wall like that.
Kyle told me what they were doing.
But we did more than just look at the animals.

Katheryn loves racing.
Everywhere it is race, race, race, race, race.
She used to be a bad sport. If she won it was 'go me, go me' (complete with dancing).
We tried to teach her that she doesn't win every time. She used to get really upset if she lost.
Now she says 'we both won'.
Nice open paths, not that many people. Perfect place for races!

We went to an exhibit we usually miss. I haven't actually been in the Rainforest exhibit in years (I acutally forgot it was there, we usually do a loop that just misses it). It had animals that the kids haven't seen before!
With Gorilla's!!

And turtles that you can press your nose right up against!

The fish were a favorite. And of course an oppurtunity to practice standing.

How can you not love that look of awe in those eyes.
Watching all of those fish swim around, so close you can almost touch them!

I remember when we first got the spina bifida diagnosis. I remember all of the thoughts and worries that went through my head. That are so silly now, but were real at the time.

Like will Nick be able to swim in the lake? Will he be able to play with Katheryn? Will they have fun together?

Spina bifida is always close to the surface - but sometimes it is thoughts like this. The joy I see when I look at my kids. The love, the laughter, the jouney together.

OK enough of that kind of talk, back to the zoo.
I think we get a couple of looks becasue Nick is in a wheelchair. And I used to think that I would care. But I'm too busy watching Nick explore like he was never able to in a stroller. To push and move himself right where he wants to go!

These little guys (lemurs) come so close!
They scared Nick at first, becasue he didn't realize that there was glass there.

On the way out we stopped for a quick photo!
(Katheryn just wanted to get home.)

And Nick had alot of fun rolling super fast (with daddy) down the hill!

At the end of the day we had an adventure girl who had alot of fun! and was really good at letting mommy snap alot of pictures.

And one very sleepy little boy!

That was one fun, family adventure!

Can I have a word? Or 3 or 4?

2012-02-10T08:18:00.003-05:00

Who needs speech therapy?!
We're doing all the work at home!
It's only been 10 days since I took the last video and already I can notice the difference between how Nick talks then and now!

And in case you don't get what he's saying...
He has started to play a game, he hides his hand and says "where is it?" then when it uncovers "there it is".
Nick is also using 3+ words in a sentence!
And he really loves talking. I could take videos all day, every day!

It just gives Nick an opportunity to clown around some more!

Thanks Bernard!

2012-02-08T22:36:00.000-05:00

Happy 13 month anniversary Bernard!

If you have no idea who I’m talking about, you /can read here where I was trying to decide on an appropriate name for Nick’s second shunt.

I thought about celebrating the 1 year anniversary of the shunt, but that didn’t work out so well last time. When Nick had to have a revision at 13 months.

So 13 is the new 12! Seems fitting for a Friday the 13^th baby!

After reading the post from 13 months ago, I am more calm with the shunt right now. It`s never far from my mind, but it hasn`t been on the radar lately (and I`m really hoping I am not jinxing myself). I haven`t measured his head in a while, we are cleared by neurosurgery for 1 year and Nick is behaving like himself.
But at the same time, when Nick wakes up in the middle of the night uncontrollably crying and upset, I mentally pack my bags for the hospital. But when a dose of tylenol and the morning comes and everyone is fine again I feel much better. That being said, I have emailed Nick`s neurosurgeon 2 or 3 times this past year.
I know the day will probably come, but I`m hoping that it`s in the far distant future.
So Bernard is welcome to stay off the radar for a very long time.

I saw (adapted) something today that is very appropriate:

You can`t scare me,

My child has had brain surgery.

A little winter would be nice!

2012-02-06T17:14:00.000-05:00

I never thought I'd be wondering where winter was in February!
Or still thinking how beautiful the snow is while I'm driving to appointments in the morning -before the snow melts on all the trees.

But every day we have snow seems to be a time to pull out the camera and take some pictures as the kids take in how wonderful it is to have everything covered in the white stuff!.

I LOVE this picutre!
Not only are the two of them standing up against the window together. But Katheryn is holding Nicks hand! I think that makes up for the kids scuffing the newly painted window ledge!

Build-A-Bear

2012-02-03T16:55:00.001-05:00

The kids got a Build-A-Bear gift certificate for Christmas, and after a couple of calender dates were aligned we finally had our date!
It was a whole family affair - Kyle had Katheryn and I had Nick. Also my brother-in-law, sister-in-law came with my niece and nephew, and my mother in law.

I've seen the store before and thought it looked interesting, but never really went in to see what it was.
You get to personalize everything.
You get to pick the type of bear, add some sounds, add stuffing and then pick out all of the clothes and accessories.
Sounds fun right?

First there is a whole row of empty bears. And you get to pick one.
Ideally the one your kid wants.
Nick liked all of them. Every one he was in front of he wanted.
Katheryn on the other hand knew exactly what she wanted.
The polar bear. Because "polar bears are my favorite"

After picking the bear you want then you stuff it.
They have a whole machine filled with stuffing!

The kids get to stuff their own bears by stepping on a lever and fill it as full as they want.

Nick kept crying when we gave him the bear. He still wasn't too sure about what we were doing.

Nick and I got to tag-team the lever. He was a little unsure at first, but once he figured out that what I wanted him to step on actually did something. Then he got into it.

We got some sounds in it as well. For Nick's I chose giggling and a multi-sound from Happy Feet 2. So when you press the hand/foot it makes a sound.

After the bear is stuffed like you want it, you get to choose a heart to put inside of it.
Awwww

Katheryn had to rub the heart against her heart, against her hand, tell it a secret (Katheryn looked at the lady completely confused with that one), give it a kiss and then put it inside.

Then it's time to get dressed!
There are a TON of clothes to pick from (alot more girl clothes than boy clothes).
But everything from holiday clothes, pajamas, costumes, work or just every day clothing. They even had underwear!

Nick didn`t really care about the clothes. But the sun glasses were a definite hit!
And those cool shoes!

Nick just really wanted those sunglasses!

And yes I know it looks like he`s strangling his bear.

But we finally got Nick`s bear all cooled up!

All of the kids got some accessories.
Accessorizing at the toy store!

Katheryn`s polar bear not only came with a red dress, shoes, hair ribbon and red purse - `red is my favorite colour`. But also the stroller and a cell phone!

Katheryn was happy with what she got!

Nick`s bear came with the sunglasses, and his very own wheelchair. Including a rocking shirt - that plays the guitar!

And his very own guitar! (which doesn`t actually make any noise)

Definitely a super-fun adventure for the kids!

Speaking in Tongues

2012-02-01T11:19:00.013-05:00

I have talked about how Nick's language has blossomed! OK, he's a boy, so I guess I should say boomed!
He talks all the time.
And it has meaning.
I just don't always know what it is.

One morning he's eating breakfast and just talking, talking. I have no idea what - it's like I can pick up a couple words here and there. I swear he was talking in French! (a language I took all through school and know how to say "je ne parle pas francias". Anyone who knows french I'm sure just realized I butchered their language.)

There are alot of words that I understand. I started making a list, but everyone day there are so many more to add to the list that I can't get them all. He probably has 100, maybe more. And sentences.

I know other moms said it would happen, and I know that at the time I knew that it would happen (most of the time I knew it would happen), and I find it magical that it is actually happening now.

This is of course after we finish our block of speech therapy for 6 months! where we worked on communication and not actual speech.
Right at the very end of our block Nick was just starting to get his words, but he was still shy about it. Still not talking that much outside of the home.

We are no strangers to speech therapy.
Katheryn is still in speech therapy. Has been since I referred her at 18 months because she had about 6 words and should have had more than 10. It took about 9 months for her to be picked up, but we have been able to apply everything we have learned back and forth between the 2 kids.

Katheryn we have goals for pronunciation of specific letters (especially K, F, G but other letters as well). For Nick I have to make up my own goals because we just finished our block and the things we learned there just don't seem to apply any more.
I'm hoping that next session we can have the same speech therapist for both kids so we can all be on the same page.
I'm trying to figure out where to start, or if I'm pushing too hard for something that will come naturally on it's own. But i just have to remember how we progressed with Katheryn. I know it will come.

All about Wheels

2012-01-31T21:39:00.000-05:00

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
Colours!

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!!!

Clinic Time

2012-01-29T10:55:00.068-05:00

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!

Listen to your mother!

2012-01-26T17:34:00.001-05:00

I didn't know who Wilma Rudolph was, so I looked her up here!

More Walking

2012-01-17T02:44:00.000-05:00

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!

YAY!!!

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!

Finally! Some Winter!

2012-01-15T23:13:00.000-05:00

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!

A big purchase

2012-01-13T10:04:00.000-05:00

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!

Physiotherapy woes and wonders

2012-01-11T21:21:00.000-05:00

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.
Why?
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!

Class Clown

2012-01-09T20:52:00.001-05:00

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.
Dog
"No Nick, it's not a dog, it's a cow."
Dog
Nick what is this? (pointing to the pig)
Dog
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.

Just because it is today

2012-01-03T16:13:00.000-05:00

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

Puzzles!!

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.

Good-bye 2011

2012-01-01T19:09:00.000-05:00

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!

Create your own free digital scrapbook

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).

Happy Zoo Year!

2011-12-31T23:59:00.032-05:00

Our new years eve plans were in jeopardy with the virus I had (I'm off work for 10 days!) But with a pair of gloves, and realizing that I wasn't putting any newborn babies at risk - we decided to head to the zoo for their annual new years party.

It was BUSY! And dark.
We saw a polar bear (up and eating), Santa's reindeer and a snowy owl (hoo hoo).

They had the carousal up and running and all Katheryn wanted to do was ride the dolphin!
And I found out that they are wheelchair accessible (so next year when it's running again, Nick can come with us)

There was some dancing

And getting ready for the 8pm new years countdown!

Nick was very excited that he could see the stage and the huge screen tv!

The only negative thing - trying to manoeuvre Nick's wheelchair in between cars, and through the slush - because people had blocked the driveway and the walkway to the accessible spots was not shoveled!
Yes we did tell them at the front -but nothing was done.

So except for that little non-speed bump, we had a good send-off to 2011.

An Ottawa trip

2011-12-30T19:31:00.000-05:00

The kids and I had the opportunity to go to Ottawa for a couple of days after Christmas.

The trip up was a little eventful.

Packing for the kids and I after a busy Christmas then trying to miss the storm that was coming.
Meanwhile I have what I'm thinking is an eczema attack to my hands and feet, and something like heat rash or something?! (I did a google search before I left didn't leave me with any answers)

After a 40 minute stop in Tweed to go to the bathroom - not impressed! Come on Tim Hortons - seriously a 2 stall bathroom for a major stop from Ottawa to Toronto; where the child change table not only blocks a bathroom stall - but it is also in front of the doorway - with about 20 people in line behind me! So not impressed!
This is where we usually stop in the summertime, but these facilities are just not up to par!

We eventually got to Ottawa (well, really just outside of Ottawa).

When we got up past hwy 7 there was snow!
Actual snow on the ground!
Katheryn has been asking for snow for weeks! She wants to make snow angels and throw snow balls. We saw the little flakes of snow on the ground and Katheryn was so excited!

Little did she know what was waiting for us!

We stayed with my cousins Phil and Joy and their 3 kids.
I think everyone had a great time. Doing nothing.

That first night there was a little exciting. I realized I forgot all of Nick's catheter stuff at home. And that I really should get to a walk-in clinic, because I did not have eczema! I had a very contagious virus that luckily my cousins had all had before and that meant they couldn't catch it again.

So besides doing nothing, getting alot of rest and being outside (until we froze in -20C weather) and stocking up on tylenol and advil, they had a great train set that the kids kept playing with, taking apart, making changes and putting back together.

What makes a better family get-together than kids playing with toys in the midst of everyone catching up!

After a relaxing 5 days (extended because of more potential weather) it was back home to reality.
Luckily I wasn't driving - my parents were able to drive me home and help with the kids (my hands are still not 100% - I'm told the virus only lasts 10 days)
This was some of the beautiful roadside views we had.
This picture doesn't do it justice. Snow covered trees! Something that I love the see in December - not so much in February!

We all had a great time in Ottawa, visiting and catching up.
I hope we can plan more visits soon!

Oh Poop!

2011-12-28T16:27:00.000-05:00

I hate poop.
I hate that I worry about poop.

Nick has been constipated. Pebbles constipated. For 5 days.
Over the weekend I kept increasing his PEG and expecting it to get better, but it wasn't. Then I had to sit back and think about how long it has been worrying me. On Friday - yes, on Thursday - yes. Today is Monday. I couldn't wait any longer. Nick was definitely severely constipated, and it was only getting worse.
It was actually the worse I've seen it.

I have been worrying about it. Really, really worried. That I actually call his pediatrician. And I NEVER do that!
But after a couple of phone calls back and forth, some trips to the pharmacy, asking questions on BabyCenter and Facebook and if it doesn't work the first time - try again with more volume. We got it!
Yup we got poop.
It only took a top-down approach of medication, and a bottom up approach of suppository and enemas.

Sometimes I think I overthink the whole poop thing.
I worry about impaction, and shunt blockage because of the impaction and surgery because of impaction ect. Kyle thinks I overreact sometimes. I don't think I do.
Nick has a whole regiment around poop. He has 3 different medications just for poop - PEG flakes (ie. miralax/restoralax), omega-3 oil and probiotics. We are very proactive with poop medication. As well as fibre in his diet (maybe not as much as we should - but he's 2 and he's starting to get picky). I'm a bit obsessed about his poop, and really don't think it gets assessed like it should unless I do it myself.

Generally we are on the poop ball. I adjust dosages and things start working in 48 hours. I think I'm on top of it - and then this happens. And I feel like I know nothing - again. I feel like I've lost control!

Christmas time together

2011-12-26T15:20:00.033-05:00

One fun thing about Christmas - coordinating outfits!!

and trying to get a picture with everyone smiling and facing in the right direction...

Katheryn and Nickolas do more of a combined effort in opening presents than individual. Katheryn quickly opens her own - oohs and aahs, then helps Nick open his.

And their new favorite Christmas book - twas the night before Christmas.
But Katheryn gets upset that Nick is in the book - and she isn't! (St Nick)

Christmas eve and the kids are opening more things.

Katheryn is helping Nick to appreciate the toys he got.

And then it was Santa time.

And Katheryn did get her hippopotamus for Christmas - like she has been asking for, for weeks!

Our Christmas day involved having as much family over as possible!

And getting some rest when we could

Until it was actually time for bedtime
(And yes I got all coordinating cousin outfits)

I was actually sick for much of Christmas day - I didn't know it, but I caught a virus and was completely exhausted! (I didn't find out I had the virus until a couple of days later)
So not very many pictures.
But we opened presents and ate food and chatted and played all day.
All together.

Merry Christmas

2011-12-25T20:58:00.000-05:00

Christmas Cookies with C(K)atheryn

2011-12-20T15:15:00.000-05:00

Another back-dated post
Some mom-daughter time with Katheryn.

She is so interested in baking – she loves making those little Pillsbury dough boy cookies, the ones where you just stick them on the pan. I had such a craving for those when I was pregnant with Nickolas – and couldn’t find them anywhere.

I thought it would be fun to make some shape cookies together. I used to do a lot of Christmas baking when I was in school (nothing like putting off studying for finals by making dozens and dozens of cookies).
I will admit that I did cheat a bit. The dough isn’t from scratch – but more of that Pillsbury frozen dough stuff. But it got the job done!

Katheryn really liked that she could make whatever shapes she wanted!

Ooooooh!

And we can make any Christmas shape we want!

And Katheryn's favorite Christmas shape!

A hippopotamus!!

All in the oven for baking

While those were baking - we decided to build a train!

(please ignore the well-lived-in background)

One thing about the train.

It kept melting on me!

A little time spent outside soon fixed that

Who knew we could do our Christmas baking with the backdoor open because it was too hot?!

We got the appropriate appreciation for our design

Then more decorating!
OK by this time Katheryn was no longer interested in our mother-daughter time.
She really just wanted to get dirty and/or eat some cookies

The kids had their very own cookies to eat!

Yummy, yummy, yummy!

You don't say!

2011-12-15T02:11:00.002-05:00

Nick has decided to show off his vocabulary.
Everywhere but in speech therapy.
I call his therapist gushing about how many words he has (he exploded from 5 words to 40 in about 3 weeks). And how I want to refocus our sessions. So we go for a session.
Nothing.
Until about 10 minutes left in our session I left for the bathroom. He starts talking.
In sentences.
With complex sounds. (his favorite word is cheese - with the ch and the eese)

Sabrina (our therapist) had to quickly scribble everything down!
I come back in - nothing.

That kid! I swear he's such a stubborn little thing he wants to talk when he wants to talk. And if he doesn't want to, then he won't.

And we leave, he's chatting and waving bye, and saying "bye-bye 'bina" and pointing at pictures - there is Santa, home, car, no and on and on and on!

I've been trying to write down all of his words and how he says them, but he keeps having more and more every day! And yes that is what I was encouraged about, when I was so worried about his language. That it would just explore one day. Well it has exploded!
It was right around the time that Nick got his wheelchair trial (which we still have borrowed). I was told that this is common, once they find their independence the language will follow.

But Katheryn has a speech delay too (now 'labelled' moderate) and we are starting some session for her in the new year. But she has difficulty is different sounds and not actual words. Sometimes I forget that some kids don't have to work so hard at language (but I did - so I shouldn't be surprised). And in the long run they can all talk.
But understanding has never been an issue, maybe it's the Ridding stubbornness in both of them. Wanting to keep their thoughts a secret and keep their cards close.

(sorry no pictures - I'll try to add some later)

Catch Up and Can't Catch Me

2011-12-11T08:30:00.000-05:00

So much to catch up on.
So much I’ve missed blogging about. I’m catching up now (I've spent 2 days catch up with all my posts).

Because I hate having things out of order, I’m going to write a couple of different separate posts –

backdated of course.

- We worked on walking in the walker
- We had an EEG
- I talked to a couple of classes
- We had Nick's walker tuned up
- Nick got his new AFOs
- We had a Christmas party at March of Dimes (CE)
- Had a Santa visit and other holiday parties

We’ve had a really busy couple of months, and every time I think it’s going to get better, I just seem to add more things to my calendar. But I’m hoping for a bit of breathing room. The last 3 weeks of December I’m leaving appointment-free. It’s like a vacation!

Of course while I'm trying to catch up on all of the exciting stuff in the Ridding household - Nick continues to show off!
Literally, while I'm on the computer he decided that it is time to conquer those stairs!

I guess I can check that off our - to-do in physio list!
Nick has LOVED exploring the stairs.
Every time I turn my back - there he is. And he laughs! Because he knows I don`t want him on the stairs when I`m not there. He hasn`t fallen, but I don`t want him to.

I tried putting a gate up (I know - mommy trying to quash Nick`s newfound independence). But that doesn`t work with a 3 year old in the house.

While we are talking about catching, Katheryn has some catching of her own.
We had a little bit of snow - and Katheryn had so much fun running around catching snowflakes on her tongue!

It's beginning to look a lot like Christmas...

2011-12-08T12:08:00.095-05:00

We are getting excited for Christmas we pulled out all of our decorations and toys a couple of weeks ago. We decorated the house outside – Katheryn says it is beautiful! We pulled out all of our Christmas movies.

We had our annual family Christmas parties. I think there was 40 members of the Ridding family there, all of the kids (all 2nd cousins) loved playing together and running around.

The dancing Santa is always a hit with the kids – I did have Nick out, but for these pictures he was too busy eating. I actually had the chair and Nick's walker out - but he didn't want anything to do with walking.

(This was before the CE party where he was much more comfortable walking in his walker with a group of people.)

Getting ready for Christmas also means getting our Christmas tree. Every year we go and chop one down. This year is was too wet and rainy and warm to go out and cut one down on the weekend we had available.

But we still got a pretty good one.

And Nick thought it was great riding in the cart above his head!

Yes I'm aware that I look a little crazy taking pictures in Home Depot. But I don't care. Look at that look! It's just asking to snapped in a photograph!

It took us about a week to decorate the tree.

Katheryn really liked these snowmen and kept bunching them together.

Nick liked playing peek-a-boo with his! He’ll pull the hat down over the eyes, then back up and say ‘boo’.

When daddy came home from work it was time to put the star up. Katheryn tried to help but got scared.

But it was up!

Now that the tree is up, and we are feeling suitably Christmassy, it was time to bring on Santa.
We talked about Santa and that we were going to go and visit Santa. We had it all planned with my in laws to have the 4 cousins all go to the mall and visit Santa. Both kids were excited. Santa is one of Nick's new words. (As well as tree)

Katheryn was very excited, waiting in line and waiting because she’s going to see Santa.

Nick kept saying ‘Santa, Santa!’ He might not look very excited - but he was.

We got up to him. Nothing.
Katheryn would have nothing to do with him.
We did get a family picture of the cousins – with my leg in the picture. I kept trying to move farther out of the frame and move Katheryn closer and she stops and looks at me “Mommy! Stop pushing me”

She has her model pose!

Katheryn and Nick are actually supposed to be matchingish, with their sweaters - but do you know how hard it is to find cute boy sweaters?!!!

When it was time for Nick and Katheryn and Santa, she just ran.

But I was getting a Santa picture for 2011 – and if Katheryn doesn’t want to be in it, that is fine. So my picture is just with Nick.

Both of them still get excited to see pictures of Santa – just not ready for the real version yet.
Katheryn has told me that she wants a hippopotamus for Christmas, so maybe next year she can ask Santa for one.

The next couple of weeks are going to be a little less busy. So we'll finish up our shopping and spend more time a home as a family, instead of on-the-run as a family. Maybe get some cookies baking or some of the fun homemade things I've been reading about. Have Christmas music on

And some snow wouldn't hurt either!

Party, Party, Party with our Conductors

2011-12-07T12:07:00.055-05:00

We got to go to our first Christmas party at March of Dimes.

Nick even had a date!

Yes, Nick and Alejandra had better get used to all of these cameras! Do you remember the picture of the 2 of them back in June? And of course we've spent the last 3 months every week working together.

The party was a great opportunity for Nick to be in a room of people and see how he moves with his walker. The perfect safe environment, with other kids and adults with similar abilities and assistance. And he did great!

We were even able to catch up with some old friends. Zachary and his mom were with us in August and Nick and Zach were paired off. They worked really well together and Barb and I were able to connect together. (She's the mom that runs Zach's List)

Nick had the opportunity to play,

and draw some Santa pictures.

Nick was not too sure about Frosty. He wanted to go and see him, but once we got close - he wanted to go away again!

But this guy!
As soon as Santa came in, all Nick could say was Santa, Santa, Santa!

It's too bad Katheryn missed it. She was upset that we went to a party without her. But we had our last conductive education class before the party, and there wasn't enough time or purpose to drive home and pick her up.

We did so much this semester of conductive education. I'm definitely going to miss it, and can't wait to start up again in April!

Cool New Shoes - and Braces

2011-12-03T12:05:00.037-05:00

We had a whole day of appointments! But really, what else is new?!

I brought Nick to a committee meeting at work - where he charmed everyone - of course! Then another quick visit and off to mom and baby group, where we left early for our Orthodics appointment and new AFO's.

This wheelchair thing is alot better than the stroller. It lets Nick have some independence, and it is also easy to for me to walk with. I have been trying to actually walk beside Nick with my hand steering, instead of behind. I couldn't do that with the stroller.

So we brought Nick's new Alfie with us for some entertainment.

It took about 1 hour in total, for adjustments and fitting.

We did a little bit of testing it out.

The end (toe) is still too long for what I'm liking. But not any longer than his last pair of AFOs.

Nick's new design is completely his own idea. The Backyardigans are his absolute favorite! He points to all of them and says each of their names.

Nick didn't have any problems adjusting to his new braces.
I was a little worried that there might need to be some adjusting to the length of the brace - or that he wouldn't like them.

But no, no problems at all.

We got Nick some new shoes as well - these one light up when he walks - but he can't see the lights...

And I already have plans for the old ones. When we are swimming in the pool, Nick likes to stand up against the side, and of course his ankles makes me cringe.
So with some swim socks and his old braces, maybe it will help.

Walker Tune Up

2011-12-02T12:04:00.046-05:00

Nick's walker got a bit of a tune up this week.
We had it in last week and both Sheka (OT) and Megan (PT) were really happy with how he's moving, and his lower body, but weren't happy with his upper body.

So out came the tools! And Katheryn's help.

Bringing Katheryn to physio is somewhat new.
We tried it initially last year and Katheryn was more distracting than helpful, but we gave it another try and see how she is
Katheryn found some distractions for herself!

Nick thought it was interesting what they were doing.

Not necessarily when we wanted him to keep going, and going, and going.

But it was all to see how we could get him to hold his wrists in neutral.

Nick has been putting alot of pressure on his wrists, so the idea is to build up the forearm support so he will use his whole arm to help him, and not just his wrist.

And also to keep his wrist from bending too much.

So it was adjusting the handle bars, building up, moving things up and down. And lots of different trials. And then wrapping it all up.

We left the walker for 1 week and then had another appointment (the one where these pictures were taken) to make some more adjustments and get us ready to send home. And out PT is going to be off for maternity leave, and she wanted our walker to be the best it could be for our new PT in January.

We got him up and running well.

Nick actually really likes the new look!

See you in the fast lane!

Speaking about Our Life

2011-12-01T22:17:00.000-05:00

Growing up I never thought I would enjoy talking to a classroom full of people. I hated public speaking, and in elementary school I would do anything not to have to talk in class. It didn’t really get better in high school or through my various degrees.

But put me in front of a class and let me talk about our life with spina bifida. I don’t even need my notes! Or PowerPoint slide full of informational and very cute pictures.

I’m lucky that I have this opportunity. (I hope everyone knows Milo - my ninja seal)

My mother works for Centennial College in the RPN program (where I have also had a placement – and where I might eventually want to work when I’m sick of hospital life). But through this connection I have been offered various opportunities to talk to classes about spina bifida. I’ve talked to PSW and RPN classes as well as OT/PT assistant classes.

And I love it!

I’d do one (or two) every semester if I could. I’d talk to different schools, different classes. Anyone who is interested.

I also ask if anyone has heard about spina bifida before, or knows someone who has it. I say it is the leading permanent birth defect in North America. I say that it is what folic acid helps to prevent (very quickly followed by not 100%, but it helps to decrease).

I start of talking about our D-day, how we were told the diagnosis. Then Nick’s birth. I talk about what spina bifida is, as well as hydrocephalus, Chiari, all those other pesky diagnoses. I talk about the surgeries (closure and shunt) what the lesion level might mean to walking, our team, our equipment, what walking aids there are and what we are using. I talk about our family and where we are now.

I answer questions. I hope I’m not too medical or scary. That’s why I like pictures so much.

I always have Nick with me; sometimes I have Katheryn with me as well.

I hope the students get something out of it. I hope that if one of them gets a similar D-day (or knows someone) they will think of how great Nick and we are doing and not be afraid.

So even with my busy schedule I always make time for these classes. I have ideas to approach other schools – or maybe even my own hospital/doctors about talking. If anyone is interested – please don’t hesitate to contact me
I wish I had a picture here to put with me and Nick talking in front of a class – maybe next time I’ll get someone to take one.

EEK! An EEG

2011-11-30T19:18:00.001-05:00

I have noticed that Nick will sometimes get staring spells.

Where he will just zone out and stare at something. I mentioned it to our pediatrician and also that I had looked up that sometimes these can be ‘abscnence seizures’. After mentioning it to the pediatrician I’ve also had other friends and family mention that they have noticed it as well.

So he ordered an EEG. And he said the words 'epilespy' which completely freaked me out. I also contacted Nick's neurosurgeon, just in case it was something he should be aware of.
But my understanding of the EEG is not for epilepsy, but sometimes kids with spina bifida will have seizures, just because of the way the brain might be.

No big deal right, just hook up some wires and see what happens.

The morning we were supposed to go I started to get a little nervous. I had the whole day planned.

We had physio in the morning. And it was pouring rain. I had both kids (and luckily my mom). Having the accessible parking sticker is great, especially with a wheelchair. But not in a hospital – where you have a total of 4 spots in the lot I park in (as staff). So I dropped everyone off. And ran through the rain by myself.

We got to visit everyone at work and both kids charmed everyone. I had Nick in his wheelchair and he is getting so good at moving himself around when he wants – even going backwards!

Then it was time. I took of my staff ID, hoped Nick was suitably tired (they said to schedule it around nap time - what nap time?!), had my camera, my book and Nick in his chair and off we went to find the place.

We didn't even have to wait very long. I was surprised, but pretty soon we were in the little room and all set up to be comfortable for 1 hour or so.
Of course out came the camera and the request that I would like to take pictures.

So this is the equipment.

Camera, wires and computer

All of the wires had to match these ones. And they had to be equal, and they had to be in the right place. And of course stay on.

How do they stay on?
Well this cup of gunk is like gel.
Nick's hair is parted, some of the gunk is put on, then the end of the wire then a little 2x2 dressing and the whole thing hardens and stays together.

All over his head.
I'm holding him and trying to distract him and keep Nick from pulling anything.
Really the head ones weren't bad.
But there are a couple of that go on his face, and those he hated.
Then his whole head is wrapped up in dressing and we want him to fall asleep!

The EEG guy took the picture for me.
See how happy Nick is about the whole thing?

Surprisingly he did actually fall asleep!
And I had my book to keep my company!

Finally all of those wires could come off!

And Nick with his brand new hairdo was ready to get out of there!

Results in 2 weeks.
The EEG guy said it looked good. Hopefully the neurologist will agree.

Morning Workout

2011-11-26T20:42:00.003-05:00

We have a new morning routine. We started it a couple of weeks ago (and this particular workout is from November 19th) and even though Nick is being his stubborn self at the beginning. We still did it.

Be sure to notice the expression on Nick's face - that "I can't believe she's making me work like this"

But mommy cuddles at the end (I guess I wasn't completely in his bad-books).
This day it took 20 minutes to walk the length of our dining room.
But he did it.

And he is still doing it.
It was hard that day. Hearing and watch Nick scream and struggle (and swear I'm sure), was not how I wanted to start a Saturday morning.
But that pay-out has been incredible.

And he wasn't permanently scarred - a quick cuddle and everything was good!

The holiday spirit

2011-11-25T12:19:00.001-05:00

We are slowly getting ready...

CE - Continuing to be Extraordinary

2011-11-22T01:22:00.000-05:00

We've been enjoying another semester of conductive education.

And we are continuing to see some great stuff. Our conductors are Abigail and Fugie (which I know I am spelling completely wrong - sorry!)

I brought my camera out a couple of weeks ago, to get some pictures of our conductive education session. We have been going weekly from October - December, 2 hours each Wednesday.

We have 2 conductors who are working with our very own spina bifida group.

I LOVE this peanut ball. It does wonders for Nick's balance. The more he's on it, the more he can sit all by himself. (I want to find one to have at home).

And one of the best parts of conductive education - is that we are not alone!
You might recognize Alejandra from past posts - our walk, and also from helping hearts. Yup, Nick's first girlfriend.

We do alot of things to increase awareness of Nick's body. Like splashing in the water and seeing how his actions will move the toys. And feeling the water - even if Nick we aren't sure how much sensation he has in his feet.
Nick has started to move his toes more, before I would only see it sporadically. Now I see it all the time. I think getting Nick to look and pay more attention to what is going on down there is really making a difference!

Nick has been showing off these last couple of weeks.
He does less complaining when we get him moving in different ways, like this wheel barreling.

And when it's time to get up on the plinth (the plank table), Nick is a go-getter!.
He gets this look like. OK I know what you want, I can do this. And just starts pulling himself up.

We usually have some type of craft to do. Our theme this week was a fishing story (therefore the water and now the fishy sun catcher craft).
Lots of colours to choose and play with. This week Nick has decided to show off that not only does he know his colours and his numbers - but he feels like sharing this knowledge!

He really liked doing this artwork. The gluing and then patting down.
And voila! His own creation.

Then it was time to get going again.
Nick likes doing this part. He pushes himself back, stands up and then pulls himself up on the plinth. Just a 'OK mom, I got this'

Nick likes showing off one of his newest accomplishments. Crawling on his hands and knees (without shoes on his hands)

Gotcha! Flashlights are definitely an all-time favorite

OK fun's over. Time for more ... fun/work!
Kicking over some bowling pins. But to make it work harder, we've moved the bowling pin into a block. So now it's not just kicking, but lifting and kicking. It also helps Nick to see what we are doing too.
I've noticed that when Nick is flat, and I'm trying to get him to kick or something. He has problems seeing what I want him to do. Because 'duh! he's flat on his back and can't see. Once he knows what we want, he's pretty good with playing along.
We also work on isolating his legs. So instead of kicking with both legs, one legs stays straight and the other one moves. Helps Nick to learn about isolating his body.

And more play! Shake, shake shake!

Oops, and more work.
Look has upset that boy is. See that anger!

But look! See that leg staying up - all by itself!!
You go Nick!!!
This was definitely something that he wasn't do in September!

Nick definitely has his favourite things to do!

Putting rings on his feet

Rolling up and down - he was actually laughing

Then it was time for more walking!

These foot print things were great to get Nick to put his feet in the right spot - something we are working on. Because Nick usually just lets his legs go everywhere!

Abagail is helping with the walker, because the stoppers stick to the carpet.

The pads also make sounds - and of course they are coloured and numbered. (Learning everywhere!)

We got something similar at Nick's birthday.

The keep with the fishing theme - we went fishing!!
Nick is leaning against the wall and holding.

And because he had worked so hard today, we let him have a seat!

Finally we had some more 'cicle time' and let him sit - on a balance board.

It's no wonder this boy is so tired on the way home!

And because Nick is doing so well with the walking - we've started to walk out after we say good-bye.

And he is doing AMAZING! Last week Nick just kept walking and walking and walking!

Nick has been doing so great with this semester of conductive education.
Unfortunately with costs and time and travel, we have to take a break for the winter semester. I am so disappointed, but hope to start again in the spring.

I'm still hoping to get insurance to cover this semester of conductive education. We were lucky enough to get the summer 2 week semester funded by a local charitable organization - For the Love of a Child.

I think that Nick has been able to do so much because of the nature of conductive education. Making him aware of his body, and aware of what he can do. Repetition so that he feels that he is in control, and lots of stories and songs and fun, with some learning stuffed in there too!

Amazing

2011-11-20T09:08:00.001-05:00

That's my kids.
My kids are amazing. You should be jealous.

I know my last post was a little blah.
But the kids really know how to cheer me up.

Hug Fest!

I feel much better now.

Wheelchair Trials

2011-11-19T20:32:00.001-05:00

Sometimes I think the wheelchair trial is not so much a trial for Nick, but as a trial for mommy.

I've mentioned that I don't want it in the house, the purpose is not for independence in the house, it's for independence outside, therefore the wheelchair stays in the car. But we want Nick to get used to it, to get moving in it. So we have to get out and about.

We’ve spent the last week out of the house every day.

Our first outing to Walmart did not go very well, Nick didn't want to be in the chair and he didn't want to push himself anywhere. When we went to the zoo he did better, but mostly I pushed him and he would go in a 5 foot area. But what I really wanted was for him to move himself more. I want him to be completely independent. Now. (Yes I know he has his own timeline...)

So we kept going at it.

I've also bought Nick some bike gloves which have really helped his poor little hands when we are wheeling around outside.

We've gone out every day to different places. As well as the zoo, we’ve walked the neighborhood, gone out to restaurants, shopped in stores and visited. We’ve been very visual.

Where ever we go, I'll leave Nick in an aisle or something and then see what he'll do. I'm trying to give him his space.

Every day we out he is starting to get more and more comfortable. He's doing well going to something he wants, now I'm just having difficulty getting him to move himself away from something he wants. Imagine that.

But I'm finding it a mommy trial. I'm finding it a bit harder than Nick is.

It's not that we are getting alot of stares or anybody has really said anything. I'm sure we’ve gotten stares, but I stay in my own little bubble and don’t really notice other people. I have had a couple people ask me why Nick is in the chair (along with how old he is). One man kept saying, "that's too bad he's in a wheelchair so young". He said it a couple of times. I've also noticed some other people go out of their way to be nice to us - which is nice.

But it's that we aren't invisible. We aren't just another mom and kids out shopping.

Now we are that mom with her kid in the wheelchair.

I know that today I am being selfish.

How can I tell Nick or Katheryn that being in a wheelchair isn't something bad, when it just makes me feel bad.

I know that tomorrow I'll feel better about it.

Tomorrow Nick will show me how much it does for him.

Tomorrow Nick will continue to show me that he doesn't think it is something bad.

Tomorrow Nick will show me that he doesn't care or notice if people stare. Let them stare - he's a rock star!

Tomorrow Nick will continue to chip away at that heavy feeling in my chest when I see how much he has to work to do things we take for granted.

I guess that's why we have trials. To learn, to endure and to overcome.

It also doesn't help that I hurt my shoulder hauling that thing in and out of the van! I can't wait until we get the lighter one to trial. Boy do I hope he likes that one better!

Sorry no pictures

I'll do less wheelchair complaining next time. Because Nick really is doing well with it.

And he's doing well with his walking too!

Posts will come - I already have the pictures taken.

Wheeling around the zoo

2011-11-17T13:42:00.000-05:00

OK, so I wrote this whole post yesterday, left it overnight to finish downloading a video. Came back this morning and it was completely gone. Not even in my draft posts. So here we go again. Hopefully this one will be as awe inspiring and wonderful as the erased one from last night!

I think I've done a number of posts about the zoo. Well, I love the zoo! I love the animals, and I love how the kids love the animals. It's free (well if you don't include the membership and parking fee), it has indoor and outdoor stuff. And they have their favorites!

As soon as they mentioned wheelchair all I could think of what that it would be great to bring to the zoo! I got out my calender and tried to find a free day that we could devote to the zoo and trying out those wheels!

Now that we have the wheelchair I knew it was time to pack up the kids and head out. So the 3 of us spent a nice Monday at the zoo. Which was perfect because it wasn't very busy at all.

What I wanted was for Nick to start to realize that he could move himself where he wanted to go.

The first place we went to was the polar bears. You might remember Katheryn's obsession with the polar bears when we went for her birthday. Nick now shares the same obsession.
Because I had the joy of experiencing Nick's first public display of two-ness!
The polar bears were not really out. And Nick really wanted to see the polar bears, and when I was taking him away he threw a yelling, screaming, kicking fit.

But then we made our way to the penguins. And the penguins were great!
These little guys were great motivators!

It was great for a wheelchair trial. In a nice flat area, not alot of people and the penguins came right up close. I could get Nick to move himself up as long as I didn't have him too far away. Too far away meant crying and pointing.
But I guess a little bit at a time.

Then I thought, hmm that ledge looks perfect for some standing.
So we did that too.

I think we should just visit the penguins for some physio every day!
Except they are at the top of the hill, and the zoomobile doesn't run again until the spring. And pushing a wheelchair down a hill is kinda difficult.

But we weren't done with the animals yet!

Katheryn wanted to go and see the monkeys. Usually they come pretty close too, but not today. Nick still liked watching them from the distance though.

And Katheryn wanted to play.

As long as they are happy!

This video is a little long, but I was trying to get video of Nick moving , and Katheryn wants me to play hide and seek with her!

Last thing we did was see who was making all of that noise!
Can you see it?

The lions were very vocal today!

The zoo was fun, but exhausting.
It was a good trial for Nick's wheelchair and it is just the beginning to show him everything that is out there, and all that he can do by himself!

I almost forgot. When we were leaving, we went into the gift shop. They were starting to decorate the Christmas tree and the lady in the store let Katheryn and Nick help! Katheryn kept telling her how we decorate our tree at home and Nick kept wanting to keep all the sparkly ones.

I guess this shows they will have fun in a couple of weeks when our tree goes up!

Who? Who? Who is Two?!

2011-11-14T20:35:00.000-05:00

The day started off pretty well.
Nick was woken up by sister Katheryn singing 'Happy Birthday' to him!

And he came downstairs to a bunch of presents on his new chair (I've loaded this picture a dozen times and saved it different ways in different files and it still comes sideways!)

All he wanted to do was play with the dinky cars! (Uh oh, I feel a 2 year old attitude coming on)

He was quite upset that we really wanted him to open those wrapped boxes and put down those cars!

But he eventually found something he liked better!

And then it was party time!

All of our friends and family to come celebrate with us!

And Nick got lots of things he liked!

Every present we opened, he wanted to play with immediately!

So this...

Turned into this...

And this...

Before we got here.

And of course birthday cake time!

Wow Mom! Take a look at that cool cake!

Um, Mommy, did you know all these people are singing?

I think they are singing for me!
I'll play shy (and give them a show)

OK time to blow!

Yup, I did good!
That's how you do two guys!

Time to eat!

Yummy, let's share!

That was good cake!

Happy 2nd Birthday! I know you had a great day, and have lots of fun ahead of us this year!

The 2 year preview!

2011-11-13T09:21:00.001-05:00

In the last 2 years we went from this

1 day

6 weeks

9 months

Last year!

15 months

STANDING!

18 months

Loving animals and touching EVERYTHING

22 months

Look at that attitude coming through!

23 months

Liking this independence-thing

Almost 2!

Preview done!

Now you have to wait until after the party (and when a have some time to post) to catch a glimpe of my litte 2 year super-hero!
Happy Birthday Nick!

The Big WC

2011-11-11T14:35:00.000-05:00

We are there. We have it. The Wheelchair.

It is the thing that you scan that list looking for. What list? The list you get when you get the diagnosis. The list that says if your child has level __ they will use various ways for mobility. And the first thing you do is look at that list to see where a wheelchair falls.

But this wheelchair is not on this list. This is a wheelchair to replace his stroller. This is a wheelchair to show Nick that he has the ability to be independent. To show Nick that if he wants to go and look at a pack of markers in Walmart then he can’t be pushed away. He has the ability to take himself back to those markers. And of course if he looks cute enough, his parents will cave and buy him those markers. But I get ahead of myself.

We had a very busy day yesterday. First Nick got fitted for some new AFO's! Yay, his are currently too small. And I knew exactly what I wanted on his new braces, even if no one I talked to knows what Backyardigans are. But I'll show off the new braces when we pick them up in a couple of weeks.

I brought Katheryn with me - she wants to come with us so I decided she could come and see how boring the appointments are. The two of them had a blast looking out the 4th floor window and look at the yellow school buses! And see mommy's car!

And we got to look at all the fishies before our appointment with Beth, OT.

And then it was time. It was there waiting for us in a treatment room.

We talked a little about it. There are a couple of different ones and I don't really understand the importance of one over the others. I guess I have some research to do.
But first we needed to do some measurements.

And it was time.

At first he just really wanted to play with his cars on the ground, so he had a couple of teary moments because he couldn't do what he wanted.
But he soon got the hang of it!

And then we had some smiles as he investigated by himself.

We had 2 different ones we tried. And to get Nick going, we let Katheryn try one too.

This green one was still a little big. Something about shoulders and wanting a smaller seat/base so that he could turn the wheels without spreading his shoulders. We want to limit wear on the shoulders - even at 2 years old.
But he could definitely get both moving well.

So we decided to take the blue one home to trial. And we are waiting to get a trial of the lighter one we saw first. I wish I could remember the names of them. (I think one was the zippy something). But this blue one is pretty heavy.

When we got home I wanted to take it out and try.
So the 4 of us headed off to Walmart to try it out.
The trial did not go as planned. We had fits and tears and parental frustration.
Nick really just wanted to be in the cart, then he wanted to be carried. So I ended up pushing him most of the time, but when we stopped he started to get the feel of going back and forth.
Especially in the previously mentioned crayon/marker aisle.

So trial day 1 is done.
The wheelchair is not going into the house, so I'd better start thinking of some new outtings for us to go on!

Take That spina bifida!

2011-11-04T09:54:00.000-04:00

Thought I'd start off with a bang!

That is Nick with his new walker - the newest one (and the winner).
And that is Nick walking independently with it. I'm not helping his feet or moving the walker. He is doing it ALL BY HIMSELF! And we were all there!
And he was happy!

So Take That! Spina bifida!!

Of course it had to happen when Nick was wearing his new Take That! Shirt. We wore it to our spina bifida group and showed it off. It was the fundraising brainchild of Colleen (Nate's mom) along with the facebook group.

Trick or Treat!

2011-11-01T20:48:00.032-04:00

We showed off our costumes, but that wasn't the end of our halloween. And I wanted to show of my great Pablo pumpkin (I am very pleased with myself!)
We went out trick or treating as well!

This is the first year we've taken the kids out.

Katheryn LOVED it!
She loved every single part of it.

She loved running up to the house
She loved rinigng the door bell

She loved talking to the people
She loved getting treats
And she loved that she ended up with candy!
(Which is weird, because she generally doesn't like candy)

Nick didn't care so much about the people or the door, he just wanted the chocolate!

We did about a dozen houses and then the girls (my neice Madi) wanted to go home.
No tears, no fights, no crying and just the right amount of candy.

My hero! Happy Halloween

2011-10-31T09:53:00.000-04:00

Back in August I was trying to figure out what to do for halloween costumes.

Then it hit me! Nick's knight! What a perfect costume, or a dragon and Katheryn could be the matching princess. So I asked Katheryn (because she cares) what did she want to be for Halloween (and this is back in August - I think she thought I was nuts - I know Kyle did).

I had images of doing a dragon or horse or something with Nick's walker. Yes, I did anticipate him walking with it, back in August. Little did I know how resistant he would be! Or how much he would hate it, and trying to find the right one.
Anyways...

Katheryn decided she wanted to be a princess. Then she saw me looking over all of the dragon costumes online and changed her mind and said she wanted to be a dragon. Luckily I know my little fickle girl. The costumes arrived (online shopping - thanks ebay!) A knight costume, a princess costume and a dragon costume. Also a dragon puppet for a prop.

Katheryn wore the dragon costume a couple of times, was upset that it wasn't green - her newest favorite colour. It was red, but she didn't really agree with mommy that all dragons are green, and red dragons are special.

So she started saying, very sweetly, that she wanted to be a princess. (imagine the head tilt and sugary voice "I want to be a princess for halloween). I did have in my head that we can have the whole family halloween costumes like last year. And have a queen and king, princess and knight. Or maybe a witch thrown in there, or the dragon puppet, or something.

But Katheryn has since said that she wants Daddy to be a wall and Mommy to be a potty. Umm, thanks Katheryn. I'm not sure what is worse (actually I do - who wants to be a potty?!)

So we've tried on our costumes, we know that they are adorable and cute.
We are ready to have our first time of trick or treating. We even have the buckets all ready.

Now all I have to do is convince Katheryn that she doesn't want to be a clown!
Maybe a clown princess?

But now halloween morning, everyone is all ready to get into their costume rules!
Including saving the princess and slaying daddy-dragon!

Just clowning around!

2011-10-30T02:35:00.022-04:00

And no, these are NOT their Halloween costumes.
Their Halloween costumes have been thought about and bought for 2 months! Including the back-up costume.

This morning when I got home from work Katheryn told me that she wanted to be a clown today. I had just bought some face paint crayons, and thought 'why not?'

The kids thought it was great!
They LOVED posing for the camera.

I was saying to them 'say HA HA HA' and then they'd face each other and say 'HA HA HA'. Of course not looking at the camera!

Then Katheryn started to pick her nose. I said 'Katheryn, don't pick your nose.' Nick looks at me - gives me one of those smiles, and then the finger starts moving up...

Well they both thought that this was hilarious! (it probably did not help that I am taking pictures AND telling them not to do what I'm taking pictures of!)

It must be so great to be a kid. Clown faces, nose picking and silly, silly giggles first thing in the morning! (Actually it's not too bad being the parent either)

Big Boy (tear!)

2011-10-29T03:22:00.001-04:00

I know a little boy who is going to be 2 years old soon (2 weeks - eek!)
So Nick wants to show you what he got!

And when I see him on Katheryn's bed and how much he loves it, we knew that it was time.
The time for the Big Boy Bed.

You know, the one where they have a little more freedom. You can't just pull up the side rail and walk away, tell them to sleep but know that he won't climb out of bed. Nope, Kyle and I thought it was time to give Nick a little bit more freedom. To show him that he could climb out of bed if he wants to. A little independence.

Sometimes I feel like I'm the only mom who wants my kid to get into trouble. Yes climb out of bed in the middle of the night, yes grab that toy you want, yes hit your sister back (oops did I just write that).

So the Big Boy Bed is kind of major.

Katheryn thinks the bed is great! She gets to climb into bed with him, she gets to bounce on the bed with him. And he gets to bounce on the bed with her!

We came up with the best idea! How to let Nick enjoy his new bed, but still give him the freedom to get in and out with his limited mobility?
2 levels of bed. The top mattress is a twin/single. Which gives Nick lots of room. Then the foundation or boxspring is a double/full. So Nick's bed has a step! A built in step.

We actually had to order the mattress and boxspring separately so when we had the mattress we just put it right down. But we got the boxspring all set up - it looks great!

We are working on getting him to back down the step (with the plain mattress he was going down face first). And I'm hoping that the conductive education and working with the plinth (the wooden table) he is getting comfortable pushing down like that.

So far, so good. Nick has been sleeping well in it. We even let him sleep in extra the first morning so that he could wake up and get himself out of bed!
He's such a big boy! (tear)

A Face of spina bifida

2011-10-24T20:17:00.000-04:00

Guess who was featured on Cassie's blog as a face of spina bifida!

http://themclellands.blogspot.com/2011/10/faces-of-spina-bifida-meet-brianna-and.html

Cassie asked us to write about what we wished we knew when we got the diagnosis.

I wrote about Happiness!
Something I've learned alot about!

Please take a moment to read about the other faces of spina bifida!

Falling Together

2011-10-24T12:09:00.001-04:00

On a nice fall day, sometimes it's nice to just have a swing by the lake.

And some days there isn't anything better than having a good swing.

Maybe finding some treasure.

And learning something new.

Going for a walk on the beach

And having time to take it all in.

Some family time - even if none of the kids want to smile for the picture!

A great meal

(even if mom and dad forgot to bring the hi-chair!)

And a quick jump in the pile of leave is a definite must!

And ending the night with some moon watching.

And we'll miss the cottage until next year!

And be thankful to a great dinner with family.

Sweet Music

2011-10-23T17:02:00.000-04:00

Making their own music.
Playing together.

A soft touch, and some sweet music.

Picture Perfect

2011-10-15T14:13:00.001-04:00

In the middle of this past week of sadness, there was some bright spots, and (if I do say so myself) some beauty.

We got our pictures from Alana this week, in the middle of the madness. (check out Alana's blog to read what she thought too).

It was so hard to pick out some favorites. They are ALL favorites. I can't even say a first, second or third favorite!!!

So I'm loaded them all up on an album. (But I guess I am posting some favorites if you don't want to go through all 40 pictures)

It's hard to put to words how much these photos mean to us.

They are beautiful, but more than that! They are us!

It is forever, it is happiness and laughter all bottled up in print (or pixels)

I couldn't wait to put them around my blog, and now I'm just thinking of where to put them all around the house.

I just wish there were more of Katheryn. But I completely know that what Katheryn doesn't want to do, she doesn't do. So when she's 16 years old and asking why we have all these pictures with Nick and not with her - well, she liked to be with Alana, where the action was.

And she flat out refused to come and join us in the pictures. (hmmm, I wonder if I can photoshop her in this one?)

And when we did coax her out, she had on her 'I'm not happy' face!

The kids LOVED the chair! It was such a good prop!

Maybe too good of a prop!

And of course we got him in the walker! Alana was able to colour Rosie to more of a red-rose. Perfect!

AND, my most favorite picture (yes I do have a first). I couldn't wait to see how this turned out. I wanted it for my header for my blog. I kept my summer pictures up until we got this one! And then it wouldn't let me change the picture all week (I had to upgrade to add more photos).

(And I do want full credit for our coordinating outfits). You know how much time and effort I had to put into these outfits! I thought about it all summer, and we even had alternate outfits depending on the weather.

So THANK YOU Alana, THANK YOU Helping Hearts!!!!! We had a fantastic experience and will have these pictures in our lives for a long, long time.

A Lost Grandfather

2011-10-14T20:54:00.000-04:00

Grief, acceptance, remembrance, anger and love.

This post is not about spina bifida at all. It is about something that touches every life, and it has touched ours before, but this past week it did more than touch. This week cancer decided to knock us down and kick us in the face. And even if you know it is coming, even if you have been informed that medically there is nothing more to do, it just means that you`ve been squinting and ready for that kick, that hurt, that pain.

This past thanksgiving has been very unthankful. My father-in-law passed away after a lengthy battle with cancer.

You know, you hear that a lot; battle with cancer. But you don`t really realize from those simple words how much of a battle it is. And it`s not a battle, simple and over quickly. A clear winner and loser at the end. It is a war.

It is a horrible, ghastly war where you will use everything at your disposal to win. You will pour poisons into your body. You will need to prepare for the next battle. And it takes courage to fight. To walk into that hospital knowing you will feel worse before feeling better. And hoping that you will feel better.

Marty was diagnosed just after Nickolas was born. For the last 2 years we have seen him go through chemotherapy, surgery, radiation, we have seen PICC lines and hospital stays, ICU and ventilators and being told he probably won`t live through the night. Then miracles and wheelchairs, walkers, therapists and a new normalcy. Before getting well enough to enter the battlefield again.

And it makes me angry! It makes me so angry that my kids will be missing their grandfather, that Kyle is missing his father, Marie is missing her partner, and we are all missing someone. I am angry that all of the plans he had to enjoy his grandchildren. Now he won`t have. It makes me angry, it makes me furious. And it makes me incredibly sad. It makes so sad to see how our lives have been changed, and everything that we will miss.
I`m not really sure where I`m going with this. Not all blog posts have to have a point. And I do write about the Ridding family, and we are missing an important part of our lives now.

This week we came together as a family. Nick had his private moments that made me realize that he has been touched by his grandfather. We were at the house, just the kids and me. Nickolas wanted me to go into the bedroom. So we went. We stood in the empty room, looked at the empty bed. Nick looked around and waited. He just wanted some moments.

Katheryn also knows that Papa Ridding is gone. I had to be careful with my words, I tried not to use `sick` - because what about when anyone gets sick. We talked about that he had to go away, and we are sad. But we can look at him in pictures.

At the visitation, we sat and looked at the photos. Nick perks up and says `Papa!` and points at the pictures. That makes me sad, but also happy that he has that memory, that both the kids had the opportunity to have memory of their grandfather.

I lost my grandfather when I was 4 years old. I have memory of him. In fact, one of my favourite pictures (which is also in our bedroom) is taken when I was a baby and it was Christmas (or Thanksgiving) and he`s holding me and I`m chewing on a turkey bone. I remember that I was not able to go to his funeral.

So yesterday our kids were at that funeral, and the funeral was full of sadness as well as the joyful sounds of children. Seems like a touching tribute for a proud grandfather.

That word

2011-10-09T11:39:00.000-04:00

They have used that word with my child. They are starting to think that it is time. It caught me completely off guard.

A wheelchair.

For my child.

My child in a wheelchair.

Yes I know why, I do. Independence.

But it’s still a shot in the gut, a slap in the face, a slewfoot. Can we give penalties and take 2 minutes? (Yes hockey season has officially started again – and my Maple Leafs are 2 – 0).

I see other kids in wheelchairs and the independence they gain. They don’t have to be with mommy all the time, they want something over there? They can go and get it. I know he will love it. I know it will be great for him.

I know all of these things, but for me, today, right now. It’s a wheelchair. For my child.

So let’s step back a sec.

Where did all of this come from?

On Thursday, we had our mom and baby sb group. We came home with a castor cart (sorry, his jaguar). But before that Nick had been fussing, he is cranky and not feeling well. So I put him in his stroller hoping he’d fall asleep.

Now, Nick is a big boy. He is tall, he is big for his stroller. He is also almost 2 years old. Do 2 year olds want to go wherever their parents want them to go? No way! They want to do things their own way, make their own mistakes and figure things out, on their own.

So put this all together, and the OT and PT at the baby group felt that it was time.

I am so lucky that I was a little pre-warned. Another mom heard what they were saying and warned me. Our group is 1 hour of parents, kids and therapists, then 1 hour of the parents leaving to talk about a specific topic. So at the end of the group when we discussed that when we meet next month we’ll look at getting him a wheelchair (it just makes me cringe writing that) I was a little bit more prepared. No tears, no sad face, I could put on my analytical, I understand and agree, face and not my emotional, mommy screaming not yet, face.

It was one day at group this year (When Nick was 18 months old) that it even occurred to me that he would need a wheelchair as a child. In my mind I was thinking 3 years old. That was my plan in my mind. That was my timeline.

I spent the entire drive home going over and over with myself why this is a good thing. Why this is actually a blessing. So I was prepared when I brought the topic up with Kyle. I was prepared when he asked the question that has been haunting me.

“Doesn’t it feel like we are giving up on his walking?”

No. Never.

I will Never give up on his walking. This is not about walking. We will still work just as hard on his walking, his walker, his mobility. We will concentrate on physiotherapy and conductive education and anything else we can get our hands on just as hard.

But, this is about his independence. Those times when he is in a stroller, just sitting there, being pushed around by mom or dad. When if he had his own wheelchair (smaller cringe) he didn’t have to rely on us. It would only be in replace of the stroller. It would not be in the house.

When we go to the mall, when we go to the park, when we go to the zoo. Can you just imagine how much fun he will have at the zoo?! Going where he wants to go, instead of being pushed around all day in a stroller or a wagon. I can’t wait!

Wait a second, did I just say that? I can’t wait to get him a wheelchair. I can’t wait for a wheelchair to give him independence. Did I just type/say wheelchair without the cringe? I want what is best for my child, and even if I have some hold-ups about a wheel chair – he won’t. He won’t see it as something negative (unless I tell him it is). He will see it for what it is – freedom.

Here are some kids that have really inspired me. And I don’t think I would be so calm about the wheelchair if they hadn’t gone first.

Kingsley

Carson (he is just a day or 2 old than Nick)

Alex

And I can look at some of the older kids

Like Caleb

And Madi

I am missing so many more. But for family and friends who want to see what a child in a wheelchair looks like, can look back. Because it is not sad faces and sickness. It is smiles and freedom all around!

Our very own jaguar

2011-10-08T13:45:00.000-04:00

After our monthly mom and baby SB group we came home with a little surprise!

This is called a castor cart. It is nice and low to the ground, and allows Nick to move himself around at a speed an almost 2 year old should be going!
He hasn't gotten the speed of it yet - imagine that - my cautious little boy is taking his time.

Katheryn thought that Nick's new car was great too.
Whatcha doing back there? You'd better not be messing with my wheels!

Every new set of wheels needs an emblem.
What do you think?

Nick's jaguar!

Here is Nick and Katheryn trying out the new wheels!

Sisterly encouragement - Take That spina bifida!

Finding the right fit

2011-10-05T11:48:00.001-04:00

We had some more walker try outs this week.

This one was a 'no'

It has the arm supports up high like what we want, but it was not very stable, or very wide.

Nick was very crunched in this walker and could pretty much sit on the edge of the walker and not do anything.

A little problem solving and adjustments were made for Nick.

This one worked alot better - except that it was way too high. We hope to adjust this - just waiting for approval, because it will be another loaner.

But it gives him the higher arms we were looking for - because Nick doesn't like walking in the regular walkers, because his arms are so low. He likes having his hands higher when he walks with me. I think it is because of poor balance and feeling safe. So we will continue to work on that.

We've been trying to find the right fit for Nick. But I think this is a good starter model that will work for Nick. It is light, not too fast, will get him used to walking in the walker. Because I know he can!

Back on the phsio track!

2011-10-03T12:58:00.000-04:00

So Nick hates physio,

he wants to crawl around on the floor all day, every day. He doesn't want to climb on the couch, or stand at the couch, or cruise, or walk, or go in the walker. We've taken a little bit of a break, not necessarily a break, so much as a hiatus, a vacation.

But now we are back on track. First order of the day?

Balance

(I got Katheryn to take this picture for me)

Nick really hates this. He isn't stable and he hates feeling wobbly.

But Katheryn (as usual) provided some more entertainment than the usual tv (even if it was Backyardigans)

That got a smile!

Which really meant that everyone had smiles!

And then it was Katheryn's time to help with some physio.

I know neither of them look very impressed - but they did like it (for a minute or so).

I'm hoping the new physio partner will help with motivation!

Splish Splash

2011-09-30T12:20:00.001-04:00

Baths are a big thing in our house. I have some water babies – am I surprised? I would spend half the day in a bathtub if I could! Katheryn eats dinner then announces to the house “Who wants a bath?!”

I talked about bath time earlier this year. And Nick hated his baths. He had a bath ring to keep him upright. But he's been too big for it for a while now. I've been putting Nick in the bath without the ring, but he just wasn't able to hold his balance in the water.

I talked to the occupational therapist in June about something we can do to help. Because I tried multiple times through the summer to put Nick without the ring and he just wasn't able to keep himself upright. So we had someone out to the house to show us some stuff that was available. (I was also looking for support on the toilet).

This minnow bath support was what he brought to show us.

It looked good, if we needed it. But (and this is a big but) it is big. It would give Nick lots of support so he could have a bath... by himself. There wouldn't be enough room for Katheryn in the tub as well.

So after 2 months of humming and hawwing if we wanted to get this, our insurance agreed to paid for it.

But I really was uneasy about getting something that would interfere with Katheryn and Nickolas play time together.

So before putting an order in for some kind of equipment, I wanted to try keep trying Nick in the tub.

And success!

You'd think I would have had more than just my camera phone!

And he's only getting better!

He is loving the ability to move around in the bath tub!

To be where the action (aka water) is!

Katheryn really likes that Nick is more mobile.

She's also notices Nick's scar on his back, she was kissing it and saying he needs a bandaid. It was a bit of an opportunity to talk about it, but she went on to playing hippopotamus and wasn't listening to what I was telling her.

Hippopotamus? You ask.

See the similarities?

In the meantime Nick has discovered the joys of exploring the bathtub.

And he keeps trying to stand up and reach things outside of the tub

I should mention that he proceeded to fall out of the tub and onto his head immediately after I took this picture!

But everything was good! Mommy was a little shaky! But Nick thought it was fun!

Sometimes I forget I have an almost-two year old on my hands!

I've got your number!

2011-09-29T21:05:00.000-04:00

Actually you don't.

It's taken me a while to write about this. (I think I have written about it in my own journal, but not really here. I had to be ready).
It's all about the letters and numbers.

For those not in the spina bifida world there are actually 2 sets of numbers and letters to work with (actually maybe 4), which represent that lesion (where the spine was damaged) or level. One is motor ability and the other is sensory ability. Then there is actual level and functional level. Am I confusing you yet?

I talk a little about it on my 'learning blog' here.

OK back to the basics: The spine is made up of vertebrae (bones) that have letters and numbers. From the top down we have 8 cervical vertebrae (C1-C8), 12 thoracic vertebrae (T1-T12), 5 lumbar vertebrae (L1-L5) and 5 sacral (S1-S5).
When we got Nick's diagnosis the best 'level' we were told was lower lumbar/upper sacral. When he was born we were told his lesion was at S1. Bonus!

But he doesn't actually function at a 'S1' level. I've known that for a long time. But I was figuring it would be something like L5. (One level up, no big deal). But then Nick has been very complacent when we try to get him to do things that we (I) believe he has the ability to do.

Everyone time I ask about what someone estimates Nick's level to be, it actually takes alot for me to ask. Because I'm afraid of what they will tell me. Even though I know that I shouldn't. I know that numbers are numbers - and nobody has Nick's number, but himself.

Nick's sensory level is pretty good. He feels all the way up his calf, but not his thigh.

His functional level is a little tricky. And when I ask someone to give me a number and letter, they always tell me that it's their best guess. That it will take time to determine. This past spina bifida clinic I asked again what they think his functional level is. Or their 'best guess'.
She did some tests and tried to get him to do some stuff. Much to Nick's dismay.
I asked about how I could do some tests at home. It was suggested I look at some different resources - but they didn't have what I wanted.
What I wanted was a simple test to give me a letter and a number.
What I found is that it is not that easy.

Oh, did I mention that she told me L3!
L3!!!
I was in a funk for days. All I could think of was L, L, L, L, L (OK I already knew that letter) but 3! 3 is just so much higher than I thought. That is actually 4 levels higher than I thought.
Well, I'm not to take that!

So online I went.
I looked at a bunch of articles that talked about flexion and extension and abduction/adduction. Then I had to look up what all of those meant, and then I had to look up pictures.

Abduction

Adduction

Knee flexion

Knee extension

Hip flexion

It also helps me to decipher what PT says when they talk about quadriceps, hamstrings ect and what exactly that means!

So what did I do when I was trying to learn about all of this?

I wrote a chart. And this is what I learned:

The reason it is so hard to figure out a level is that different muscles and abilities are from multiple nerves. Hmm. Not so easy!

L1, L2, L3, L4 - thigh flexion

L2, L3, L4 - thigh adduction

L4, L5, S1 - thigh abduction

L5, S1, S2 - extension of leg at hip (gluteus maximus)

L2, L3, L4 - extension of leg at knee (quadriceps)

L4, L5, S1, S2 - flexion of leg at knee (hamstrings)

L4, L5, S1 - dorsiflexion of foot

L4, L5, S1 - extension of toes

L5, S1, S2 - plantar flexion of foot

L5, S1, S2 - flexion of toes

So now that I know a little about 'physio talk'.

So lets just say that I'm not taking L3 lying down.
And hopefully I will eventually learn that Nick is too young still to give a number too. And even if that number is L3 (which I don't think it is), it doesn't matter. It was just a bit of a shock when I expected L5 (maybe L4). And I'm going to stop taking about numbers and letters now.

SB&H General Meeting

2011-09-21T16:31:00.000-04:00

I know, what a boring title!

I was invited to the SB&H general meeting to win an award. Good thing I got an invitation because while I had really wanted to go I was scheduled to work that day. But when I was going to get an award, I begged and pleaded until someone took my shift!

AHH! I was looking at the site to link here - and look who is front and center on the website for the Spirit Wheel Walk Run!! That's right! ME (oh yeah and Nick is in there too)!!! Spirit Wheel Walk Run: Enthusiasm and Creativity in Action

The meeting had 3 guest speakers. Dr Drake who is a pediatric neurosurgeon at Sick Kids (he isn’t Nick’s neurosurgeon, but a lot of our kids in our group has him) and he talked about shunts, and infection rates with shunt protocols. He also discussed the MOMS study from a neurosurgeon aspect.

The next speaker was Dr Ryan, he was a obstetrician at Mt Siani (again not one of Nicks/my doctors, but one of the popular SB doctors). He went of the MOMS study some more (at high speed), but also talked about bringing intrauterine surgery for spina bifida to Canada. He anticipated that there would be this surgical option in Canada in a year (how exciting is that?!) And also that OHIP has approved the surgery at CHOP (Philidelphia) which sets a precedent for other Ontario residents who find themselves newly diagnosed.

I was also excited about this option for an obstetrical nurse point of view as well. I could just imagine working with parents who just had the repair surgery. Something that might be interesting to pursue in the future (as if I had time).

The last speaker was Dr Wright, who is (Nick’s) orthopaedic surgeon at Bloorview. He started right at the basics and discussed research and what it means (a very basic review for me who has taken multiple research courses) but very helpful to the audience who were leargely not-medical. He discussed a new approach to orthopaedic surgery which is mostly hands off. Hip dislocates? Many years ago they would operate, but then they found that it isn’t that helpful. Scholiosis? It needs to be pretty bad to consider surgery. Club feet? Don’t go to surgery first.

That was the educational part of it (and I really enjoy the educational part).

There is also a puppet show. A company called Teaching Awareness through Puppetry (TAP) has a puppet with hydrocephalus - Andrew - and we got to see the first performance. It is aimed at kids in grade 1 – 3.
I think this picture is from a different company - but the idea is the same.

I got to meet people from the organization that I had just talked to via email. Then they gave out awards. Ooo! That’s where I come in! And other parents who have been fundraising the last couple of years. Including Sharon Enis who recently wrote a book about her experience after her daughter Gabby was born with spina bifida. (here is a video talking about her book ect)

I recognized the other parents who got similar awards from their fundraising with the SWWR.

Oh and did I mention that in our recent Current Magizine, I’m not in it just once, but twice! Our walk from last year and this year.

This fundraising thing is a lot of fun!

And talking about fundraising – it’s calendar time again! Just $20 gets you a cute calendar, a chance to win money and knowing that you are helping a great cause! Just contact me for details!

Nick thought the award was fun to play with!

Wow you can see through it!

Is this yours mommy?

But i want it!

Stairs... Shmairs!

2011-09-14T21:20:00.001-04:00

We just needed a little determination

And a helping hand

And we get success!!

I am going to put a side note - he did not climb the stairs on the day I took the pictures. He waited a couple days later and climbed up all the stairs all by himself! Just in time to wake me up for my night shift!!! Of course no pictures that time.

Helping Hearts

2011-09-13T21:19:00.002-04:00

I learned about a wonderful Canadian organization back in June. It's called Helping Hearts and it provides a free photography session to families of children who have had to overcome/or are dealing with life threatening illness or permanent disability.

We already have some SB stars on their website!
Gage
Alejandra
Emmett
Layla (I don't know Layla's family, so I hope it's ok for me to link to her photos - it is public and says she was born with spina bifida)

These pictures are beautiful and amazing and breath-taking. And the stories that go with them melt your heart! I was a little hesitant about applying, Nick's life is not threatened, and sure he has a permanent disability, but...

In the end I decided to apply for a session.
To apply you fill out a form about your family and your child.
They ask questions about your experience with your family. I thought that I would share my answers:

TELL US ABOUT YOUR FAMILY AND THE CHILD WHO ENCOURAGED YOU TO APPLY FOR THIS SESSION:

We have 2 children, Katheryn who is 3 years old and Nickolas who is 19 months.

We found out that Nickolas would be born with spina bifida and hydrocephalus when we were 22 weeks pregnant. When we got the diagnosis we were encouraged by doctors to terminate the pregnancy, we were told he would have poor quality of life and it would have a negative impact on our daughter's life. We investigated what living with spina bifida meant, and found this outlook to be very negative and incorrect. We were lucky to have family and friends who supported our decision. The pregnancy was very hard, not knowing how he would be, having a range of possibilities we might encounter. When Nick was born he had his first surgery at 24 hours old and spent 2 weeks at Sick Kids. He his since had 2 additional surgeries for a shunt insertion and repair.

From the moment we brought Nickolas home, my daughter Katheryn said he was hers. They have been almost inseparable ever since. They want to see each other first thing in the morning and last thing at night. Their relationship and how they relate to each other is amazing.

Nickolas is facing mobility issues, he has his own timeline about when he will do things. But he is moving forward. Alot of the things we were told about when I was pregnant are very manageable. Nickolas is a happy and healthy little boy. He just needs to work harder for some things.

DOES EVERYONE IN YOUR FAMILY KNOW WHY YOU ARE PARTICIPATING IN THIS PORTRAIT SESSION?

I haven't heard about this program before.

The pictures that you have on this site are beautiful. We have done other portrait sessions, but many photographers do not seem to understand Nick's special needs or to be able to work with what he can do. Or to show off aspects of his life that help him to move, instead of hiding things that make him different. (I'm not sure if this makes sense).

I am very involved in showing Nickolas and sharing that he has spina bifida. That 'this is what spina bifida looks like'. To try to educate others (family, friends, strangers ect) about spina bifida and what it means. That it isn't scary, that it isn't a mistake, that spina bifida is a part of who Nickolas is.

WHAT HAS BEEN THE TOUGHEST PART OF YOUR JOURNEY SO FAR?
The toughest part right now is not to look at Nick and compare him to other kids.

It is sometimes difficult to see how much harder he has to work to do things that come so easy for some kids.

WHAT HAS BEEN THE BEST PART OF YOUR JOURNEY SO FAR?

Nickolas.

Definitely Nickolas. He has opened up a whole new world for me and my family. We can appreciate things we took for granted before. He does not know he has challenges, he does not know anything is different. He is who he is, and he is fine by that.

He is happy and easy going and I wouldn't change him for anything. So the best thing about our journey is that we have him.

IF YOU COULD HAVE ONE WISH, WHAT WOULD IT BE?

I could wish that Nickolas didn't have spina bifida. And that, that would make our lives much different from what they are right now, easier, less worry.

But I actually don't wish that. If Nickolas didn't have spina bifida he wouldn't be my Nickolas, he wouldn't have his amazing strength and determination and make our family the way it is.

So I don't wish that.

I wish that more people know about spina bifida, that it wasn't a bad word. That people (public) were more accepting about disabilities and differences. I wish I could show off my beautiful child and say THIS is what spina bifida is, not diagrams and numbers and statistics and medical jargon.

http://helping-hearts.ca/

About 2 weeks after I sent my application form in. I was contacted by an amazing local photographer, Alana McClure. She called me to talk about what it was that we wanted, and we talked for 20 minutes! We discussed different things that I thought I wanted, and she sent me a questionnaire (that took 20 minutes to fill out). Asking about the kids, what kind of pictures we wanted, what we liked out of her own work, etc. One thing I really wanted is to have our photo shoot outside.

And both of us are incredibly excited to work together!
Our earliest date was September.
Which was good because even though I wanted to do things right away, the waiting meant that we had Rosie with us. (Rosie

September finally came!
We had a meeting last week with Alana to talk about what we wanted and all get on the same page. Also to get the kids more comfortable with her (Katheryn especially, is notoriously difficult to photograph - crying and throwing fits).

Some things I wanted was to have Nick's walker in some pictures, to have family pictures, but also the kids together and alone. I also really liked some shots that she had in her portfolio.

I spent ALL SUMMER trying to figure out what outfits we would wear and how we could all coordinate (Jill you would have been so proud). Notice Nick's plaid shirt, notice how it has 3 different colours...
Both Kyle and I commented to each other today about how different today's experience from other photographer's we have gone to. We worked around what Nick could do, and actually had him working for some of the pictures. No sitting down and looking pretty! Upright and showing off!

What I wanted out of this experience:
Family photographs where the photographer won't want basic sitting, standing etc pictures. Ones that will show off Nick's abilities and how he has achieved these! No hiding equipment, it is not something to shy away from, to hide, to be ashamed of.
Yes Nick has spina bifida, yes that is why we qualify for this. Yes it is a great program, but look at our wonderful family. We haven't suffered, we celebrate ourselves and our own abilities!

The story of a Walker

2011-09-04T11:25:00.000-04:00

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!

2011-09-03T21:31:00.000-04:00

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!

2011-08-28T21:18:00.000-04:00

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!