Don’t Blink

Well, she’s gone.  Off to college – my first born, my first Scoliosis warrior.  Our jobs as parents are to work ourselves out of a job.  We WANT them to become independent and capable and ready to spread their wings and fly – yet we also want them close.  I am overjoyed and excited for her – she is doing great at college.  Great roomate, great school, new friends – I couldn’t be more at ease with her situation there.  But…she’s still not next to me and it’s uncomfortable.  We don’t think about her Scoliosis much anymore.  It seemed like our entire lives for so long, but now it’s just background noise.  Maybe we are more used to it, or maybe it just got easier, but it only creeps up every once in a while.  It did for me during move in – “is that mattress going to be comfortable for you – I don’t want your back to get sore”.  Also, we have the additional challenge of locating a massage therapist in her area that accepts our insurance – because we need to make sure she keeps taking care of herself.  She’s eating relatively healthy and still making time to workout, so that’s good – she needs to maintain her good habits away from home.  But, the reality is that my job, while not entirely done, has significantly decreased and now it’s up to her.  I just grab onto those rare video chats and our texts and hold on and appreciate that we can keep in touch so easily.  I remember that I’m always there when she reaches out and needs me.  And, I remember that my life is much more than my kids – that they seem like everything, but that they can’t be – because when they are gone, something needs to be left.  So, here is my advice:  1.  Don’t let Scoliosis dominate their youth – don’t wish the time away to “when you don’t have to brace anymore”, etc…the time will zoom by.  So, find ways to enjoy the time you have, regardless of the challenges swirling around you.  2.  Keep developing you as a person (apart from being a parent) and your relationship with your partner – because, when the nest empties, there needs to be something left.  3.  Nurture confidence, competence, and independence in your child at an early age.  It will make the transition to “adulthood” so much easier for both them and you.  Don’t let their scoliosis condition become the excuse – they will feel so much pride and so much confidence when they overcome the extra challenges they need to endure.  Life is full of roadblocks – they have to learn how to navigate them.  My heart is with all of you Moms and Dads out there sending off your kids to college – it’s one big tornado of emotions! And, we have no choice but to hold on and ride it out!

A new Scoliosis bracing solution – much closer to home.

Most people who read my blog know that I’m not a fan of the Boston brace.  However, two years ago, when my son had to return to bracing after a several year hiatus, his curves were still very mild (25 degree-ish).  In order to save a lot of time and money going to the National Scoliosis Center (which was, and still is, our gold standard of bracing), I decided we’d try the in-house orthotists at the University of Michigan.  I was hoping for a brace that did a better job of tackling the 3-D issues of Scoliosis than the typical Boston brace, and the orthotist I worked with said it would.  However, to my disappointment, it really just came back as a typical Boston brace – a tight girdle that did very little for three dimensional rotation.  My son found it to be very uncomfortable, and we weren’t getting much correction it in, but we had him wear it for a year since we had purchased it.

After the year of Boston bracing, I knew that, if he had to keep bracing, I wanted to find a place that would do a Riggo-Cheneau style brace.  Fortunately, our Doctor told us about Lance Weersma, at the Mary Free Bed center in Grand Rapids, Michigan.  So, instead of driving 16 hours to the National Scoliosis Center, we drove three to the west side of Michigan to meet with Lance.  We were very happy we did so.

First of all, the Mary Free Bed facility is wonderful.  You don’t even have to worry about parking – they will valet your car for free!  So, it’s very easy to get in and out.  The staff is all incredibly friendly as well.  Secondly, Lance has a wonderful rapport with parents and kids alike.  He got my grumpy teenage boy to crack a smile more than once, AND, most importantly, got him involved in the process of being measured for a new brace.  Our first visit consisted of Lance and his assistant taking detailed measurements.  Lance uses the Gomez Orthotic System, also referred to as the GOS brace.  It’s a variant on the Riggo-Cheneau, but it is similar enough that we ended up with a very effective, and relatively comfortable, brace.

On our second visit, Vaughn got his brace (it took about a month).  Lance made some adjustments to it to make it fit perfectly.  Already my son noticed a BIG difference in the comfort of the GOS brace vs. the Boston he had the year before.  The straps on the GOS open in the front, while the boston opens in the back.  I find front opening to be much more user friendly.  Also, the plastic that was used for the GOS is made from a Polyethylene plastic, which is more pliable than the traditionally used polypropylene.  Therefore, most of the brace is a softer plastic, but then the areas that need to be pushing on the spine are strategically hardened and reinforced.  The GOS also has several holes built in, as well as looser recesses, which allow the spine to shift as it is being pushed over.  These relief spots also take away the “girdle” feeling of the brace.  It’s still tight where it needs to be, but they minimize those areas as much as possible.  All in all, my son found it MUCH more comfortable and, therefore, it was MUCH easier to get him to wear it without complaint.

GOS Brace front

GOS brace back

After my son received his GOS, we went to see our regular Doctor at U of M, who took an in-brace x-ray.  We were very happy that his upper curve was corrected quite a bit, but his lower curve didn’t get as much correction as our Doctor wanted to see.  So, we met Lance once more and he made some tweaks that improved the effectiveness even more.  He was definitely willing to work with us until the brace was just right.  He even found a time we could meet at a clinic that was closer to our home, to make those adjustments.  Also, as problems arise (like when my son had a spot with irritation), Lance is always available via email.  This type of personal touch and availability is rare in the medical field, and it’s so wonderful when you find someone who goes that extra mile to ensure the best possible care.

All in all, I am very happy that we found Lance at the Mary Free Bed clinic – we got a great brace, we got to work with a very caring, personable, and talented orthotist, and we were able to have the brace billed through our insurance (a very big plus!)  If you are in Michigan, or surrounding area, I would highly recommend you make the trip over to Grand Rapids to see Lance.