New look!

As usual I got bored with the background of the blog and needed a bit of a update.

Orthotics and ...

It is that time of year again.
Orthotics time.
And you can tell that Nick is starting to outgrow his orthotics. He is growing taller and so they aren't fitting as well.

The plan had been for his KAFO to only be temporary. That was the plan, and we all know how that works.
A quick little chat with physio, turned into a couple of 30 minute phone calls.

And the decision to keep the KAFO on the left leg

We have a new PT, she is the school age physiotherapist, so she has only met Nick in September, and she sees him during school hours, without me there.

I've been talking with her about orthotics, wanting to figure out what we are doing and when we will be getting fitted.

I talked about my concerns about keeping the KAFO, are we giving him too much support that will prevent him from gaining that support himself? Or does he need the extra support, and if he needs it then I don't want to say no because of ....
Because of what?
My idea and wishes for what I want for him? That I want him to have less support, that I want him to need less support. And just because I want him to need less support, doesn't mean that he doesn't need that support.
Or that having a KAFO is really pain in the butt, with pants and skin breakdown and heat.
Or that I really don't want to do something that could prevent him gaining strength.

So I am deferring to the professional, the physiotherapist. She thinks that the KAFO is needed, so that is what we will get.

Except that wasn't it all.
This past week when I was talking with her she mentioned that his right leg has been turning in. Turning almost all the way around by the end of the day.

His right leg has always been the good one.
And now it is turning in.

Turning in, that simple little phrase, that subtle sign that I'm supposed to watch out for.
Or is he just tired and its normal?

While PT talked about maybe considering a KAFO for the right leg, all I could think about was tethered cord. It's not supposed to do that. It is not supposed to go backwards. Function in the right leg is good and strong.
If all of a sudden he starts to need 2 KAFOs is there something else going on? I did ask the dreaded TC questions, she doesn't think it is tethered cord, but she is not a neurosurgeon. And my worse-case-scenario brain jumps there.
Or is it just simply activity. School is busy, he does a lot of walking in his walker, is it just simply that he is tired and doesn't pay as much attention to his leg. Or even that his AFO is too small to maximize what he needs.

I am not sure.

I'm going to ask his neurosurgeon. The specialist who will be able to tell me if I should be worried or not. Because I am trying really hard not to be worried, not to think about surgery, and handing my child over to a surgeon, all for a little twisted foot.

So I started talking about orthotics. We are going to go with the AFO-KFO combination, and see if there is something we can add to an AFO to give it more support at the end of the day. Kind of a mix

All of this and I still don't have a design yet!

Birthday Boy!

Happy Birthday Nick!

 

 

This was Nick's first birthday at school, the first birthday away from us.

He had a lot of fun! Brought cookies into school, shared with his bus driver

 

And then had cake and a party at daycare
We finished the day with a dinner out



Nick's birthday got me thinking, and remembering.

4 years can really change a lot.
4 years ago we went to the hospital to have a baby.
Had that baby and got to hold him for a couple of minutes

And then we both went away
Me to recovery and he was transferred over to sick kids within his first couple of hours

In the meantime a simple little sore throat and a little cough (not fun with a C-section) turned into a H1N1 diagnosis.
And for a week this is how I got to see my baby boy
Through a picture

 

Having to give consent for surgery over the phone, and getting report from the doctor, over the phone. Not being able to go and see him before that surgery. Just trusting...

 

 

The rest of his family could visit (except we kept Katheryn away, until we could bring Nickolas home)

 

I could call and check up on him.
And of course there was the pumping every 3 hours (with mask to not contaminate anything).
I can remember the wondering. How was he doing, why wasn't I more upset that we were separated. Not really feeling like a mom.

 I can remember like it was yesterday the drive in with my father the drive downtown.
Wondering what it would be like when we got there.
Would I recognize him? Would I even know my own child?
Would I feel that bond I'd been missing?

The nurse had to show me/teach me how to pick him up. How to be careful

I don't remember what it felt like to leave that first day. I don't really want to remember that part. I remember that I had to say that I didn't have a cough (which takes weeks to go away with H1N1) and guzzling cough syrup even though it upsets my stomach

But it took a couple of days before I was able to stay over night
But in no time I was staying in my pjs, moving the room around how I liked it, listening to rounds and attempting to know who all of the doctors and residents were (I wasn't very good at remember names)

We made Nick's room as personal as we could. Cute clothes every day (no boring hospital gowns) and a homemade blanket

 After 2 weeks, a big dressing and a wound infection we finally got the all clear that we could be discharged.
I had his going-home outfit all picked out!
It took a couple of hours to get organized and fill our prescriptions, and then there was the rush-hour traffic.

And Nickolas got to meet his big sister!

I tell this story to people and they can't believe it.
I suppose I was a very strong person at the time.
But the time isn't a horrible memory. It was just 2 short weeks in the last 4 years. (The diagnosis day is definitely a horrible memory-day). We had a son! We got to take him home! Sure there were some bumps in the road, but in the end he was still ours.

So even while talking about C-sections, separation, flu viruses, surgery and a newborn, I was positive, it was just a journey.

It started 4 years ago
And it seems so long ago, but I can also remember it like it was yesterday!

 Happy Birthday to my Nick!
I hope that you have as much joy in your life as you bring to me! Love you!

Birthday Party... a la Backyardigans

So Nick has had it in his head that he will have a chocolate birthday cake with a backyardigans candle on it.

And I found one online... with $10 S&H. So I didn't get it. I thought... there will be one in the store... well there isn't. In all of the stores I looked at.

So it was up to me to be creative

 

Nick was happy so I guess it worked out.
Luckily I did buy some backyardigans stuff from another website (that didn't carry the candle)

And of course Nick wanted me to bring the houses.
This was the houses from his Halloween costume (his wheelchair one)

For Nick's birthday we decided to go bowling!

The had this ramp for Nick to use.
Nick's friend Antonella got to use it too

All the kids had fun.
We had 9 kids all together and about 15 adults, with 3 lanes or bowling

 It was definitely a winner for Nick!

If you are wondering about the hat...
Nick wanted to be another backyardigan... Pablo, the one with the helicopter hat

We generally kept track of who was up next, but it didn't really matter

I think the highest score was 115.

After bowling was time for pizza

And of course cake

And singing
He wasn't very sure about the singing

Oh no!
Not cutting into my beautiful creation!
(Nick might have gotten too much joy out of that one)
He was very specific that he only wanted to eat Pablo.

All of the kids got bowling medals

All of the kids were excited with this giant Pablo balloon

After lunch was the arcade
And then it was time to bring a tired boy home

 Oh yeah and presents

And smiles

 Nick had a FANTASTIC Backyardigans birthday party!

Happy Halloween

The day has arrived!

Time to get ready to head out to school

 

Nick had his walker...

 

We've had a number of people who don't know who Tryone is...

(I think I did pretty good...)

 

 

(I was afraid to send his wheelchair costume with the houses I spend hours doing to school)

They went trick-or-treating at school

 

 

 

And Katheryn was a super-hero

Just like she wanted since the summertime.

With make-uped mask

Katheryn wanted to be her own super-hero.
She was excited to go, and I had plans to do all this crafty-stuff to her costume, but it didn't really need any touch-ups. Katheryn was happy with it (she just wanted the make-up - and colour in her hair)

  The kids picked out my costume

The day and night called for rain and wind.

So we wanted to get going in a clear period

 



 See my foam houses!! I didn't really get any pictures of the finished product
It was all made of foam and plastic so that it can withstand the rain

And it did
We got to the end of the street before the rain started
But we got soaked by the time we were done (and kids wanted to go back too)

 

I forgot how last year we had some issues about actually trick-or-treating

Until we got to the first house

and the steps

 

Nick didn't really mind though
Some people in the houses came out to give Nick candy on the driveway, and Katheryn was good at asking for something for her brother, or one of us going up with her.
(We did have one person who thought he was Santa's reindeer... with the houses)

 He  didn't notice, didn't care.
And hopefully I'll have a plan if her comes to that point.
But right now it's about fun and showing off how cute they look!

And what some sugar at bedtime does to the kids
(And vampire teeth in the Halloween bags)