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!

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.


  1. The letter and number don't decide what your little man will be able to do. He's a rock star!

  2. Ughhhhhh... I feel this one. Opening level is S1, functioning level is L1. Please take that knife out of my heart, thanks, or at the very least, stop twisting it. It took me a long time to accept, and I have now. Actually, I cling to it. ;) God help the doctor/nurse/therapist who tries to tell me it's in the terrifying 'other letter'. I just sigh now thinking back to when L5 functioning was our Worst Case Scenario.

    Anyway, one year after hearing our horrid letter/number combo spoken out loud, I'm in a much better place. King will do what King will do. Nick will do what Nick will do. And we both know that L1 or L3 does not define exactly what a child will or will not do. Look at some of these L2 guys walking around! That's not supposed to happen! So, if L3 bothers you, then close your eyes and take a step forward. Stretch out your arms. Feel that? It's my bubble. Come on in. There are no numbers here. ;)

  3. No numbers and letters here either. It doesn't matter... only Lewis will show me what he will do. I refuse to have him defined by a number- good or bad!

  4. Number's smumbers! He'll kick spina bifida in the butt like all our kiddos do :) Thanks for that info though, will be using all those diagrams to see what caitlin does lol. He looks like he's rockin that kaye walker!

  5. I agree - the numbers can be hard to look at - but you know as well as we do that our little ones will not be controlled by numbers or letters - any more than we were controlled by the numbers and letters that tried to convince us to give up our babies "for their own good." I'm sorry you were going through this struggle recently - and it's frustrating when the numbers don't always seem to add up the way we think they should. But then again, math never was my favorite subject. ;) The reality is - the numbers don't always give us clear cut data - they are flexible and ever-changing - but our children will show us how to solve each problem one day at a time. Hang in there. Nick is doing SO great! Love to you all. <3

  6. I wish someone could have told me that when I was pregnant with the twins. My SB child is not defined by the numbers and letters used by his specialists. It’s not clear cut at all as I’ve learned several months after birth. Little guy is a mixed bag when it comes to leg function and sensation. They all are.
    His specialists say T12 yet his early intervention PT thinks that Noah is bullseye L2. Connor and I don’t care about the function levels. We’re happy to let Noah show us what he can and cannot do.


  7. I hate the numbers and letters. My SB child is not defined by his birth defect or lack of movement or defect level. SB is a snowflake disability for several reasons. Me and my partner are letting our little guy write his own story instead of listening to the medical team predict his abilities and disabilities. Logan is thought to be bullseye L2-3 according to his PT and orthopedist as well. I’m more concerned about his poor bladder function and shunt malfunctions than anything else in SB land. Forget about the function level. My biggest nightmare is poop related. I also think about accessibility issues. Someday a wheelchair is in our future. Raising a child with SB is not for the faint of heart at all.