picture to follow technical difficulties
(Told in the voice of her Mommy…)
Beauty in her new Spincecor Brace that took
all afternoon to fit and get right over many hours this afternoon. It’s been a
long day and a long evening.
I wanted to write our story on this as we have all been
so out of sorts many of you have only got bits and pieces. We have been absent,
and hurting, and busy and in our own bubbles. Here is the story.
2.5 weeks ago Beauty was diagnosed with moderate scoliosis
(not the mild kind that 6 percent of the population has that causes no issues
and warrants no treatment) It was sudden and unexpected. A suspicion from the
doctor of “there might be a very mild scoliosis here so let’s get an X-ray just
in case to keep an eye on it” ..quickly turned into “this is a 30-35 degree
curve that needs to be treated with a brace ASAP”
She has gone to Ste-Justine Orthapedic surgery unit and Spincor
Spinal specialist’s clinic. She will also have a consultation at the Shriners at the end of March. She has
adolescent idiopathic scoliosis with a substantial curvature of the spine. A
right thoracic single curve with a milder compensatory lumbar curve. Her apex
is at T8 which is higher in the spine. Overnight we have become specialists in
all of this.
We don’t know if the curve will progress or not..it is
wait and see . The goal of bracing is to halt the progression of the curve to
hopefully avoid spinal fusion surgery when she has stopped growing. She will
wear the brace until skeletal maturity (riser 4) . She is now riser 0 and right
before her peak velocity growth. That is why imperative to get this brace on
ASAP.
After two weeks of consultation and scientific research,
we have decided to go for the very innovative Spincocor athletic brace made for
athletes and dancers and gymnasts. It works in a completely different way than
the traditional Boston rigid brace that she was also prescribed and fitted for.
It moves with you and puts you in the corrective spine movement as you move and
forces your body to relearn neurologically and physically the new corrective movement. The brace was invented by two former orthopedic
surgeons at Ste Justine hospital and now is used by chiropractors and surgeons
across the world. She will wear this 20 hrs. per day for the next 2.5-3 yrs
until growth is complete. We choose this one as it will move with her. As a
highly athletic girl and dancing and moving being her whole life-this brace was
the obvious and innovative choice.
www.posturtek.com if
you want to check it out.
I had this dream of writing you all tonight and having a
picture of Beauty dancing in the brace smiling. That was what was in my mind…but
of course reality of tonight is tougher. Lots of tears…scrambling to find an
outfit that fits over the brace for tomorrow…lots of brace rubbing against the
skin…lots of worrying, figuring out how to get the brace on and off, figuring
out how to sleep with it on. Tonight is a tough night.
The next few weeks especially will be a big adjustment
for her. The corrective position the doctor has put Beauty in .. is no walk in
the park..at all. It will take some serious getting used to and all her movements
now although possible and doable are limited by elastic band resistance. So she
is working 25 times harder than you or I to do her normal movements-move in a
mobile way, rotate her shoulder or rotate her spine. She will get used to
this-both her body and her mind but there will be adjustment of course. Also an adjustment to clothes and fashion. She
will have a lot on her plate for a girl in grade six who before this day never
gave thought to physical limitations and barriers or what clothes to wear in
the morning.
And as many of you very close to us know-this has not
been an easy time for our family in general for the last 5 monthsL It has been one blow and
crisis after another for months now. I have no doubt that we will make this all
beautiful somehow…but I guess for now we are just letting ourselves feel it.
All that to say we will all get through this-and Beauty will too of course. We are all handed challenges as a family in our lifetimes
and many of them we cannot expect or anticipate. This one will be ours. And we
will all use it to grow and change and evolve love. You can be sure that
somewhere and somehow all of this will end up making sense..
And Beauty? Oh my gosh I know she will too. We have been
witness to the confidence and strength and beauty our daughter has so many
times over these last two weeks. The belief she has in her body and in the works.
The grace and kindness, the leadership and strength….the sheer beauty of her
spirit. The confidence she has in herself to say “Here I am world-this is me”
She is already planning her little get together we will
host for her friends at school to show off this new brace and how it works. And
she is coming to Novartis o do a lunch a learn and show us a thing or two about
scoliosis. She will do a dance without the brace and then in it-to show both
the power and foccr of both her brace and her own body srepitate the obstacles
it has been given. We are so proud of our daughter. Of who she was before all
this-how she is handling it all now (both the sadness part and expressing it
and the strength part-)and who she will become because of this experience.
Thank you for all of your emails and texts and support
and love-especially today. Thank you for understanding and supporting us
through these tough times. We know we have not been ourselves…and we know that
must be hard on so many of you. So many have asked what you can do to help
her ? If you have a flair for fashion offer up your help to go shopping
with us? Include her in things and give her things to look forward to? Understand
and be patient with is all?
With love and thankfulness
