Sunday, October 30, 2011


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 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 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 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...

Wednesday, October 5, 2011

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!