A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Friday, November 29, 2013

Song and Dance

We have had a lot of singing and dancing in the house lately

Nickolas has been cha-cha-chaing to any type of musical tune

 

Katheryn has been singing her bullying-awareness song

Katheryn actually sings everywhere. Especially in the public bathrooms.
Makes keeping track of her easily.

Katheryn has also been taking acro-dance classes, and it was her recital yesterday.


She had so much fun! Skipping and jumping, bridges and somersaults.

In the middle of it she kept coming over and hugging Nick.
Went well, until he accidently head-butted her in the nose.
After the crying she went back and finished.
They had time to pull someone from the audience to dance with
Nick grabbed Nick and kept dancing and spinning him.

Even after she ran him into the wall (which they both thought was hilarious) 


Thursday, November 28, 2013

TC

In my last post I talked about orthotics and concerns about Nick's foot turning in. SB mommies know what I'm talking about, but for everyone else, it may see like a bit of an over reaction.

The answer is TC, or tethered cord

I talked with his neurosurgeon who agrees that we should get it checked out.
Not as an emergency or anything, but a MRI in early spring.
Good, that means we are still getting it checked out, and I'm not handing my child over for major surgery because of a foot turning in... yet

I'm trying very hard not to freak out. To think of how all of the kids I know did after their TC surgery. And how their parents survived it. Even if they did worry a lot before hand
And we aren't even there yet! Maybe it is just the excitement and busyness of the day at school.

But let me back up a bit.

Here is a video by the show The Doctors that helps to explain it a bit

The spinal cord normally hands loose in the spinal column


As children grow older, the spinal cord raises up in the bony spinal column, but when it is tethered, it doesn't raise, and is pulled tight. And there is nerve damage.
A picture is available here

The symptoms are not obvious, but are gradual changes. And that's what we are supposed to be watching out for, subtle symptoms. So here I am, unsure if there are any subtle symptoms.

My understanding is that any damage that is done from the nerve damage, is permanent. So you don't want to wait for huge changes, because surgery doesn't fix it. It just prevents further damage (and hopefully doesn't cause further damage - with the spine surgery and everything)

Surgery can free the scar tissue, but creates more scar tissue.
So I'm always watching out for symptoms, while hoping that I won't see them.


So I have a couple of months to think and wonder and watch.

Monday, November 25, 2013

School Update

So how is school going?

It's been a couple of months.
Nick is enjoying himself and learning

He rides the bus for about 1 hour in the morning and the afternoon (sometimes napping)
They obviously sing, and so he knows all the words of wheels on the bus.

Nick has gotten homework as well,
OT/ST related

And I've been talking with his physio as well.
Asking questions and trying to figure out orthodic stuff
(But I'll have a follow-up post all about that)

It is such a huge change not to be there when he is getting therapy.
How do I know what he is doing, or how he is doing

We are still having difficulty with Nick recognizing numbers and letters.
He can do a connect-the-dots puzzle, and can recognize the letters in his name, but doesn't know... or at least won't tell me... what the letter is.
Nick has also been writing his name

"Go to the top, go down... jump to the top... go down, then up" He says as he is writing a 'N'
He just won't say it is an "N"
But he says the N-I-C-K that I show him are in his name (or other letters aren't)

Nick has school friends, he likes his teachers.
He swims on Fridays

And Nick has started to learn how to read.
My mom told me how Nick is learning is how I taught my brother how to read.
Read the page, talk about it, use the pictures for clues

We read a book called "The Farm"
It started with I see a cow
I see a horse
ect.
He uses his 'popcorn finger' to follow the words and  uses the picture to read
He also has a list of 'popcorn' words and a song to learn these sight words

The one thing that we have to work on is his voice.
When I went for a teacher day they told me that Nick won't speak up for himself. One of the student volunteers put the wrong coat on him one day, and he didn't say anything, or put him in the wrong wheelchair, and he would say it is too small but not that it wasn't his.

So we are working on this. Trying to get him to speak up
 

Sunday, November 24, 2013

New look!

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

Friday, November 22, 2013

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!

Wednesday, November 13, 2013

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!

Sunday, November 10, 2013

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!