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!

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!
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

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!

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

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!