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, September 30, 2011

Splish Splash

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!

Thursday, September 29, 2011

I've got your number!

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!
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.

 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.

Wednesday, September 21, 2011

SB&H General Meeting

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!

Wednesday, September 14, 2011

Stairs... Shmairs!

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.

Tuesday, September 13, 2011

Helping Hearts

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!
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:

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.

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.

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.


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.

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.


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!

Sunday, September 4, 2011

The story of a Walker

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.
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!

Saturday, September 3, 2011

Learning and Working!

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!