Our very own jaguar

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

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!

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

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.