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!

Off to college blog

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.

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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.

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.

Scoli-Graduation

I am now back after a writing hiatus that was supposed to be brief, but ended up lasting two months – we have been busy with a flurry of activity, including my daughter’s high school graduation, me directing a community theatre production, a trip out of town, dealing with my son’s new bracing issues AND…. DRUM ROLL PLEASE… my daughter’s graduation from her Scoliosis treatment!

A few weeks ago, we visited her orthopedic surgeon for the last time.  It’s been 5 years since surgery and all is looking just GREAT.  We’ve been working with Dr. Li a (and her predecessor Dr. Vanderhave) at University of Michigan Mott Children’s Hospital since my daughter was 6…so…11 years!  6 of those, she was bracing.  The Doc informed me that most families don’t even follow up that much after surgery, but my daughter STILL has a 40 degree curve, and a lower lumbar curve that is not fused.  So…I just did the follow ups because I wanted to make sure I crossed every T and dotted every i.  But, now she’s done.  This photo says it all….plus, she got one last rifle through the sticker bin. 🙂

Scoi grad

 

Of Bullies and Besties

Raise your hand if you’ve been bullied or picked on as a youth.  Yeah? Me, too. And, for me, it was just over “normal” stuff, like being overweight, wearing glasses and being nerdy, and…well, when all else failed, just existing as a grade school female.  Those of us who have been bullied know that it really does suck. And, those of us who have kids who wear braces, who may not stand perfectly straight, or who bear large scars down the length of their backs – well, these can just make them fodder for more abuse from their peers.

We, as a Scoliosis family, have been blessed. Both of my kids wore a brace to school at one time or another (for my daughter, it was 6 years), and they claim (and I believe them) that they were not bullied once. NOT ONCE!  That is almost inconceivable. But, in our teeny tiny town, where the kids’ classrooms more closely resemble a family gathering (and many times, the classrooms ARE literally family gatherings), they all know each other very well.  This can be a blessing and a curse, but I think it was a blessing in our case. Some kids are still not the nicest, but they all have issues – and they all know each other’s issues. So, if you want to throw a stone, it won’t be long before the stones easily come back to you.  But, in addition, I genuinely think that, like any family, these kids really care about each other. So, they may not always be happy with one another, but they don’t really want to hurt each other deep down.

Many of the people reading this article, however, HAVE experienced some nasty bullying – or, just plain teasing from peers.  It’s very hurtful and it can make a child feel very alone. I’m here to say, though, that all it takes is a few besties – one or two REALLY good friends to align with, and life feels a whole lot better.  You don’t need to be the most popular kid in school, you just need those few friends that you can count on – no matter what.

My kids both have that small tribe of friends.  My daughter is graduating this year and leaving her tribe to go find new allies, but these girls, pictured below, have been so important to my daughter and to our family, that I wanted to recognize them.  They don’t judge each other, they support each other’s quirks and idiosyncrasies, and they encourage each other in school, rather than compete AGAINST each other. I love them like they are my own kiddos – after all, I’ve seen 3 out of 4 of these girls grow up since preschool – together.  

 

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Besties (L to R) Shelby, Faith, Cynthia, and Tristen

If your child comes home discouraged because they were made fun of for something related to their Scoliosis, I can’t give any better advice than the old cliche’ – “If they are making fun of you, you don’t want them for friends anyway.”  It’s cliche’ because it is absolutely true! But, I would recommend taking a few more proactive steps. The next step I would recommend is to ask your child, “Who seems nice that you DO think would make a good friend?” and then maybe plan something special for your child and that other child to do together.  Friendships can grow with just a little water and fertilizer. So, instead of focusing on the “rotten vines”, cultivate the good ones, and turn those “bully” tears into “bestie” talks. Once they find their tribe, the naysayers will fade into the background.  

I pray that all of your children can find their tribe of besties, just like my daughter has with these girls.  To Faith, Shelby, and Tristen – this Mom thanks you for everything you have been to my daughter, is proud of everything you have accomplished to this point, and is excited for everything you will do to make a positive impact in the future.  And, those in the tribe who are not pictured (you know who you are) – the same goes for you! Congrats to the Vikings Class of 2019!

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Cynthia chose a backless prom dress – to show off her well-earned scar!

Young Gymnast and Scoliosis Patient Spreads Hope

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Ellie-Ruth is one very determined 11-year-old.  Diagnosed with Scoliosis at age 9, she and her parents were faced with the choices that all of us are faced with: which treatment options should we choose?  And, how will this affect our child’s daily life from here on? But, the one thing that Ellie-Ruth and her parents knew she could never give up was gymnastics.  Ellie-Ruth was very involved with and passionate about the sport from a young age, and she was determined to continue to reach for her goals, regardless of her diagnosis.  Her parents found specialist Dr. Kris Lundine, who is currently with the Epworth hospital in Richmond, Victoria, Australia, and Ellie-Ruth began treatment with nighttime Rigo-Cheneau bracing and Schroth Therapy.  While some children are advised against continuing gymnastics with scoliosis, Ellie-Ruth’s specialist took a different approach, focusing on the advantages of her staying strong, especially in her core.  Ellie-Ruth’s Mother, Diane, appreciates the fact that she found a specialist that does whatever is necessary to avoid surgery and one that supports her daughter’s goals.

Ellie-Ruth continues to work on her treatments, and currently visits her specialist every 6 months.  Her curve is holding at 44 degrees. Her hard work with gymnastics has also paid off. Competing in numerous competitions across Melbourne, Australia, she has achieved 6 Gold Medals, 5 Silver Medals, and at least 4 Bronze Medals.  She also qualified for the Victoria State Championship last year! Clearly, she does not intend to let Scoliosis stop her! “Gymnastics to me is my life,” says Ellie-Ruth, “I have got a curve, but that doesn’t stop me from what I love.”  When asked what she would say to other young Scoliosis patients like herself, she responded, “I would tell them to never give up on your hopes and dreams.” We thank Ellie-Ruth for sharing her inspiring story and her message of hope with us all.  She is proof that you can continue to work toward any goal while battling Scoliosis.

Ellie Ruth 9

 

A Journey Through Flatback Syndrome

Leslie Hamilton Perry was first diagnosed with Scoliosis at age 13.  Within a year, in 1973, she had her first surgery, where surgeons inserted Harrington Rods to help straighten her spine.  This solution kept her relatively functional, until 2005, when she started bending forward. Over the next year, she found the condition steadily worsening, until she was fully bent over.  

Before surgery

In 2011, she was diagnosed with flatback, which is a condition in which the lower spine loses some of its normal curvature, which can shift the center of gravity too far forward in the body.  The result is that the patient can have trouble standing upward. It can also cause chronic pain and the loss of ability to do daily tasks.  After her diagnosis, she had rod removal surgery, followed by a third surgery in the same year. Neither surgery helped. After living in pain for a decade, she found revision specialist Dr. Matthew Geck and traveled from her home in Mississippi to Austin, Texas for a grueling 13 hour surgery.  Afterward, she was finally standing upright and felt like she had her life back. Later, she followed up with a 5th surgery to extend the fusion further up, to T2.  

 

After surgery

Dr. Geck
with Dr. Geck!

In an attempt to help others like her, Leslie joined forces with Carolyn, another patient of Dr. Geck’s, to form a Flatback support group on Facebook.  The group already has close to 500 members, but Leslie and Carolyn want to continue to spread the word so they can help others through support, information, and encouragement.  When asked how she managed to cope for so long with constant discomfort and difficulty, Leslie said she did so by taking it one day at a time. She waited 6 years to get a diagnosis and to find the right Doctor to help her.  I think we can all learn from her the value of never giving up.

Leslie’s greatest piece of advice is that “you are your own best advocate. If you think something is wrong, it probably is. Get several opinions on treatment options, and when surgery is the only option left, find a surgeon who specializes in Flatback Syndrome revision/ adult Scoliosis.”  I would add that you should also go and join her facebook group.  We can all be better off if we reach out and seek help from those who have gone before us.  Thank-you to Leslie for sharing her story!

Leslie and Carolyn
Leslie and Carolyn

For all the Scoliosis Queens (and Kings)

This has been a very busy, but wonderful year for our family.  Our original Scoliosis Warrior – our daughter – is now a Senior in High School!  She was diagnosed with Scoliosis at 5 and I started this blog 10 years ago to help others learn from our experiences.  How far she has come!!  Well, this winter, she surprised us by deciding to run for Coming Home Queen.  Up to this point, she has had zero interest in things like this, but she wanted to run so “at least one female basketball player would be on the court”.  So, we got her a pretty dress (that laid wonderfully on her not-so-straight upper body) and some mega heels (that she walked in with total grace) and got ready for the big day.

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She is not only the ONLY senior on her varsity basketball team (yes, we live in a VERY tiny community), but she is a captain, and helped lead her team to a victory on the basketball court that night.  Then, she ran and got her clarinet, helping the band to play the National Anthem.  Then, during the first half of the Boys’ game that immediately followed, she cleaned up and transformed into her “Queen Look”.  And, yes, at half-time of the boys’ game, she was crowned Queen.  I was proud of her – not just for winning (which is voted on by the middle school and high school students and staff), but for putting herself a bit out of her comfort zone to go for something new, that she had never thought to go for in the past.  Then AFTER the Boys’ game, they had the dance (that she helped plan, as President of the Student Council).  This girl has NOT let Scoliosis stop her ONE TINY BIT.  And, she’s never acted as though she were any different than anyone else.  I don’t know what it feels like to be in her body.  She barely ever complains of discomfort, but, since she has been battling this since she was young, maybe her “normal” just entails more discomfort than for some of us.  Regardless, she never ceases to be my inspiration…and my muse.  One of our biggest fears when our children are first diagnosed is if this Scoliosis condition will prevent our child from living a “normal life”.  We want them to be safe, secure, happy.  But, I would say, looking back, that it set her up to live a life that is ABOVE a “normal life”.  I would never wish challenges on my children, but I can recognize that they do make them stronger and more confident.  For all of you Scoliosis Warriors out there, who are hesitating to put yourself out of you comfort zone and try something new – I say just go for it!  Don’t let anything stop you.  Allow yourself to be Queen – or King – in whatever area you strive to be the best.

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