Before

We're officially in the before.  As in "before Ben has a Selective Dorsal Rhizotomy". 

Ben had an all-day evaluation at the Shriner's Children's Hospital in Montreal last week to determine if he is a candidate for SDR.  Ben saw OT, PT, an orthopedic surgeon and the neurosurgeon...all with the goal of figuring out if and/or when Ben should have an SDR. 

(For the details on Selective Dorsal Rhizotomy, check out this great link from St. Louis Children's Hospital.)

First of all, Ben was an absolute trooper.  What a long day it must have seemed to him.  Everyone wanted to see all that he could do...and more.  And everyone wanted to touch and prod him...and get him to walk, just one more time.  This started at 8am and by 3pm when Dr. Farmer (the neurosurgeon) asked to seem him walk again, he just couldn't do it.  It was a full-on meltdown and so The Backyardigans finally came out.

But that was OK though...as PT had taken many videos of him walking earlier in the day.  With a walker, with quad canes, with shoes and AFO's and in bare feet.  Like I said, he was a real trooper.

And the unanimous opinion was that YES, Ben is an excellent candidate for SDR and should have one as soon as possible. 

I have been hoping that Ben would be a candidate for this surgery since probably the 1st week post-diagnosis...when I was still in that google-as-much-CP-stuff-as-I-can stage.  The main criteria for a patient to undergo SDR are (per St. Louis Children's Hosptial Website):

At least 2 years of age
Diagnosis of spastic diplegia, spastic quadriplegia or spastic hemiplegia
Some form of independent mobility; for example, crawling or walking with or without an assistive device
History of premature birth; if born at full term, child must have typical signs of spastic diplegia
No severe damage to the basal ganglia on MRI examination
Patients exhibit potential for improvement in functional skills after dorsal rhizotomy

And Ben meets all of these criteria.  Dr. Farmer prefers to perform SDR on children under the age of 5.  It's a balancing act between doing the surgery before major deformities occur and doing the surgery when the child can excel at rehab. 

Check out Ben's before video...walking barefoot with quad canes.  I am still amazed that he can do this in his barefeet.




So...we are waiting for the phone call to hear the actual date that Ben will have his surgery.  We asked to have the surgery as early as possible in January...and that didn't seem to be a problem.  Hopefullly we will get the call in early December.

We met with the social worker while there as well to discuss how our family with be able to handle Ben being in Montreal for 8 weeks this winter.  Yep, 8 weeks.  That's what is stressing me out more than anything else at this point.  Luckily, I don't work any sort of real job.  I take on contract work when I'm able to...so I just won't take on any more work.  Also, my husband basically works for himself so he's also able to take off some extra time.  And we also have a great nanny that will be able to care for Daniel while I'm away in Montreal with Ben. 

There were a couple of highlights from our visit to Montreal.  First, when describing Ben's medical history to a doctor, he interrupted to ask "if I was a nurse or in the medical field".  Totally made my day...and impressed my husband too.  I've been bragging about this ever since!

But the super-dooper big deal?  We met a 16-year-old girl who had had an SDR at 5 years old from the same doctor.  She was back for a follow up.  I saw her earlier in the day.  She was walking completely independently with her mom.  I noticed a slight limp and immediately knew that she had CP....but totally thought that she had a very mild case.  It turns out that at age 5, she was very similar to Ben...walked with a walker and way up high on her toes.  She now walks completely independently!  I cried while talking to her and her mom.  She says that she does tire more easily than her friends and can only tolerate 2-3 hours at the mall...how amazing is that!

I did try to get some idea of what Dr. Farmer expects Ben's results to be.  Of course, it is hard to say exactly.  At this point, Ben can walk with a walker and quad canes, but neither of these are at a functional level.  He tires extremely quickly and usually ends up in his stroller (well, now his wheelchair...since it finally arrived!).  Ben was a Level 2 on the GMFCS until he turned 4.  Now that he's over 4 and can't walk without an assistive device, he has moved up to a Level 3.  I don't think that independent walking with no assistive device is the goal for Ben (although I think it is in the realm of possibility), but I do think that he should at the very least be very functional with loftstrands (otherwise known as forearm crutches).  And I would be THRILLED with that result.

The way things are going at the moment Ben will be in a wheelchair.  Able to transition well and be fairly independent, but in a wheelchair.  The thought of him being able to walk (albeit with help) is absolutely thrilling.

Dr. Farmer also talked to us about the long-term results.  75% if his patients require no further surgery after the SDR.  That statistic amazed me as I was certain that Ben would need additional orthopedic surgery(ies) after an SDR.  Turns out, this is not at all certain at this point. 

I'm also excited to be (hopefully) done with botox and serial casting.  Yes, these are great tools for delaying surgery, but I will be thrilled to leave them behind.  Over 60% of Dr. Farmer's SDR patients don't even require botox after surgery. 

I think I've managed to mostly recap our day in Montreal.  I'm sure I'll think of more details...and I'll try to post those too as I think of them.

And now the wait begins...

Christmas Cards

Janet Harrold of Painting for Hailey is selling Christmas Cards that feature children with disabilities.  Janet is an amazing painter (I have 5, yes 5, of her paintings) and all proceeds go to support alternative therapies for her granddaughter, Hailey.

She is taking orders throughout the month of October so that people can have their cards with lots of time before Christmas.  Go and check her out!

Do you live here too?

I said I was on a break...and I am, but I'm still reading and I just have to direct you to this awesome blog post by my friend, Shasta...Dispatches from the Land of Not OK. 

There are many awesome blog posts and essays out there that are written for the parent of a newly-diagnosed child, but this one is meant for your family and friends...as a way to explain how life really is now.  Love it.

Break

Yep.  I'm taking a bit of a break.  From blogging.  I'm still here.  Still reading your blogs.  But just not up for blogging at the moment.  I'm not sure why.  Maybe just a bit too busy (the understatement of the year).

Everything is good with us.  Actually my new mantra is "Life is good today"  just like the main lyric from The Zac Brown Band's song "Toes".

Because really life is good.  Really good.

If you've been a long time follower and would like to still keep up with me (and Ben), then by all means, send me an email at aboutthesmallstuff at hotmail com and if I feel like I know you well enough we can be Facebook friends.

If anything big happens, then I'll be sure to pop back here and update you all.  We're still hoping that Ben is a candidate for a rhizotomy and are keeping all fingers and toes crossed that it'll happen in early 2012. 

Love to all of you.  And don't worry, I'll be back.

The Life That's Chosen Me

Erin Breedlove from Healthy, Unwealthy and Becoming Wise just shared this song/video on her facebook page.  It really touched me and sounds so much like what I say when I try to explain what it's like to have a child with CP.



The Life That's Chosen Me (written by Karen Taylor-Good and Lisa Aschmann)

We had such expectations, we would soon be giving birth
To the next Chopin, the next Einstein, the greatest child on earth
And we'd be the perfect family, soon we'd have the perfect kid
We'd never have a challenge or a problem, God forbid

Oh but Life had different plans, so I need for you to understand

Don't desert me, don't ignore
I need friends now more than I ever did before
Show compassion but please don't pity me
I'm a parent just like you, it's true
But I have special needs

I need you to notice that my life's different from yours
I need you not to judge me, don't condemn and don't keep score
I'd love an extra pair of hands, or just a hug or two
I need you to acknowledge that I carry more than you

Got the world here on my back, so I just thought I would ask

Don't desert me, don't ignore
I need friends now more than I ever did before
What you take for granted comes so hard for me
I'm a parent just like you, it's true
But I have special needs

I need answers, I need help, it's so much work
And a miracle or two sure wouldn't hurt

Don't desert me, don't ignore
I need friends now more than I ever did before
It's not the life that I'd have chosen, but it's the life that's chosen me
I'm a parent just like you, it's true
But I have special needs

I need you to listen, I need you to care
I need your understanding, I need you just to be there
I need your friendship, maybe a hug or two
Oh God I need a miracle.........

The parts that most resonated for me:

"Show compassion, but please don't pity me"

and

"I need you to notice that my life's different than yours"

These two sentences are pretty much the EXACT same sentences that I use to explain our situation to my friends. 
Did this song touch you like it did me?

On my way back up

My last post was a bit negative, but honest.  And above all, I try to be honest here when I write...otherwise what's the point?  The reason I chose to write that post is basically because I know that there are others out there feeling the same way...and there's nothing I hate more than reading a blog (especially a special needs blog) that's all "sunshine and rainbows"...because that is simply not reality.

I truly appreciated ALL of your comments.  Every last one of them.  Thank you so much for reading and commenting...it really makes my day.  I especially liked Sarah's comment "It doesn't get easier or harder. It just gets different."  How true.

Since that post I think the rollercoaster has started to go up again...just check out this video of Ben walking up the stairs with his canes...totally independently!





Isn't he adorable in his train conductor costume?  And isn't Daniel a typical almost-4-year old trying to get in the shot?

So yep...here we go...back up to the top of that rollercoaster!

Who said this would get easier?

I thought this CP-thing was supposed to get easier?  Because lately it's been feeling a whole lot harder.  Last year, Ben was almost 3 and I thought it was hard having an-almost-3-year-old who can't walk.  That was a walk in the park compared to having an almost-4-year-old who can't walk and is starting to understand how it affects his life.

It breaks my heart to see him holding back and watching all the other kids run circles around him.  And I think it's starting to break his heart too.

Last year, he was doing so well with his walker, that I really thought that by now, he'd be using it like crazy and maybe even starting to use forearm crutches to get around...and maybe-just-maybe taking those first independent steps.

But nope.  Spasticity totally sucks and Ben struggles more this year than last year.  Often choosing a stroller or wagon over his walker. 

Last year, I had two happy little boys who really had no idea that Ben was any different.  This year, I take one little boy to soccer while the other one asks me why he doesn't have soccer cleats.

Last year, no one really noticed that I had an almost-3-year-old who crawled to get around.  This year I feel their stares and unanswered questions.

So yeah...I'm feeling the struggle a bit more lately.  I was doing so well all last winter...accepting this CP-thing.  Not crying all the time.  Actually feeling a little joyful on occasion.  I thought I was on the path to "this CP-thing isn't so bad"...but instead I feel like I'm on a detour that has somehow brought me back to those days just after diagnosis.  I'm having lots of thoughts that I thought I was done thinking.  You know the ones.   Things like "why us?"  And lots of others along that line.

I guess when people describe our special needs world as a ROLLERCOASTER, they hit the nail on the head, eh?  Now I'm just wondering when I start climbing upwards again...