Weathering Growth Spurts: In Scoliosis and in business.

As Scoli parents, the one thing we all dread is the GROWTH SPURT.  It can come at any time and catch us unawares.  Growth spurts are typically the time when Scoliosis goes a bit wild and curves can increase greatly during these times of rapid change.  This last year, my son had the ultimate growth spurt – about 5 inches in one year.  Last year, when we took him for his Orthopedic checkup, he was celebrating about 4 years out of brace.  The first time my son braced, Luke from National Scoliosis Center made him a brace that we credit with a DECREASE in my son’s curve by over 10 degrees.  And, my son was able to live blissfully at this smaller curvature until…well…adolescence.  So, when we had his checkup and realized his curve had increased, we knew we were heading right back to National Scoliosis Center.  (You can see more about our visit HERE.)  Well, we went back to the Doctor in September (yes, it’s taken me way too long to write an update), and were very happy to find out that, after a year of wearing his brace only at night, we were still at the same curve! (possibly less, but there is always that standard deviation)  Whew!  To weather a 5 inch growth spurt and only have to brace at night is a big win!  He’s holding on around 22-26 degrees.  We figure if we can hold him there, we will be very happy parents indeed.  And, if he can keep just bracing at night, he will be much happier.  We fully expect this year to be a very large period of growth as well, so we want to stay fully armed with the best brace we can.

This year has been a period of rapid growth in my EmBraced In Comfort business life as well.  This is most likely why I have been neglecting my blog (sorry).  My business has grown a ton, we are working on lots of new exciting changes, and it’s been a full-time endeavor to weather those growing pains.  In business, as in Scoliosis, rapid growth is often a sign that something might go uncontrollably haywire.  But, we are weathering it and bracing for another year of growth next year.  We are so happy when we go read the reviews of all of our brace-wearing customers to find that we are, indeed, making a difference for you all – our Scoliosis family.  That is what keeps us doing what we do, day in and day out.


Yesterday’s hard is today’s easy

Yesterday was really hard for me.  I had a migraine, which, for me, involves strobe/blackout vision.  Then it kind of just turns into mind-fogginess and headache for a couple days.  And, I was scurrying to get new samples ready for a photo shoot and my machine would not work correctly.  The samples were not happening.  I was SO FRUSTRATED.  My colleague looked at me and said “It looks like your work day is over”.  I had to cancel the photo shoot, admit defeat, and leave in a haze of uncertainty.  I didn’t know if I could fix this problem with the machine (and I’m still not sure how I’ll do it).   But, then I thought back to my past struggles.  Struggles that were just as hard and overwhelming several years ago as this one is now.  But, most of the biggest struggles I can think of (especially in my businesses) are now things that seem easy to me.  When I was working through them, I was frantic, lost, in complete disbelief that I could solve them…even ready to QUIT!  But, now I think most of those challenges are simple.  They are simply replaced by new and greater challenges.  So, I decided to think of this machine like I would probably view it in several years.  I will figure something out (still not sure what yet), and someday I will look back and remember that THIS time I didn’t despair.  This time I remembered what I had been capable of in the past.  And, I simply chose to push through it.

Dealing with a diagnosis of a loved one can be the same way.  I remember how I was in the early days of my children’s Scoliosis diagnosis.  I was frantic, lost, confused, not sure how we would proceed.  And, now, looking back, I can see all that I’ve learned and I feel confident that, no matter what the next appointment brings, we will have a solution.  Just remember, if you are new to this – it gets easier.  It gets better.  It may not ever be EASY, but life will one day return to a comfortable rhythm.  You WILL discover your plan through this and you WILL work through it – have confidence in yourself and, when all else fails, think like your future self – “c’mon, we got this…one foot in front of the other”.



Braced, a Scoliosis Book Review

braced cover

Thank-you Alyson Gerber for creating a book for our curvy kids – finally.  Thank-you for creating a book that isn’t just facts and figures, but a story about a young Scoliosis patient who is going through the same thing that many of our kids are going through today.  I was asked to evaluate this book by a local librarian and it was actually the first fiction book that I took the time to read in…I’m embarrassed to say…probably a year.  And, I love to read.  I just have too many other things going on.  This was well worth the time, though. (and spurred me on to read more)  I was hoping that this would be a well-written piece and it did not disappoint.  (And, I am a very picky editor!) It is definitely written for the young teens and tweens, but I actually enjoyed it quite a bit, too, because it gave me the perspective of a teen mind that many of us Moms don’t get to catch a glimpse of very often.  The story was interesting – making it a good book to recommend to any child, not just one going through Scoliosis.  It would also be great to recommend to friends of Scoliosis kids, who might be having a hard time understanding how to be supportive of their friends.

Braced, is about a young girl named Rachel, who loves soccer and loves her besties.  It takes the reader through her journey of bracing – through all the ups and downs, emotions, and regular teenage life. I asked my daughter, who is 15, to read, it, too.  Although at 287 pages it is a good-sized book, my daughter was done in an hour and a half.  I think that is a tribute to what a well-flowing book it really is.  I asked her if she shared any emotions with the main character and her response was surprising – she said she really didn’t remember the time she was bracing. She braced for 6 years!  But, since it was from the age of 6-12, she doesn’t remember a lot of those emotions.  And, we did not have either of our kids in a Boston brace.  As I’ve mentioned in other articles, although it is the standard out there, I do not think it is very effective, compared to other treatments.  But, that is ok, because the trials and tribulations that Rachel goes through in the story are relatable to any young person going through trials –and it’s useful for their parents, too.  My daughter enjoyed the story for what it was.

I highly recommend you get your Scoli friend or family member a copy of this book.  Pair it with a Higgy Bear and you’ll have a great gift set! (Ok, maybe a Brace T-shirt from EmBraced In Comfort, just to round it out) 🙂 Happy reading, everyone!

Perfectly Imperfect

We’ve all heard the phrase “Progress, not perfection”.  Perfectionism is something I spend a lot of time thinking about because I struggle with it every day.  It seems that no matter how much I do or how far I’ve come, I always feel that I fall short due to my constant plague of perfectionism.  Striving to be great is a good thing, but, perfectionism can really hold us back in some instances, especially when it comes to dealing with an illness or a malady, like Scoliosis.

When my daughter was first diagnosed, I was overcome with anxiety – and experienced a lot of sadness for my child, whose body would never be perfect.  I knew after that diagnosis that her life would change forever.   I also felt overwhelmed by the many different treatments out there.  I wanted to choose the perfect one – but, as we all know, there are no perfect solutions.  And, there are no guaranteed outcomes.  So, I struggled.

But, over the years, I’ve grown to expect less and less perfection from my life.  I think that God honed me through trial until I realized that perfection is an impossibility.  And, it can also be a hindrance.  How many times do people feel paralyzed due to the overwhelming need to “figure it all out” before they start an endeavor?  How many are afraid to start something because they feel they need to make things perfect or they might fail?  If I had waited to start my business until everything was perfectly aligned, I’d still be waiting to start – because nothing is EVER perfectly aligned!  People can hold themselves back from doing SOMETHING because they don’t want to risk falling short of getting EVERYTHING.  But, life isn’t that way.  It doesn’t exist in absolutes.

Now, when an overwhelmed parent contacts me with a new Scoliosis diagnosis, I try to point out that this disease is a marathon.  It’s a journey without an end.  It will be the new normal of LIFE.  So, don’t worry if you can’t brace a perfect 22 hours a day from the start.  And, don’t worry if you miss 1 out of 5 exercise-therapy sessions.  Even 10 hours per day in a brace is progress toward that 22.  And, 1 out of 5 exercise sessions is better than zero.  My son gets stressed out when he is going to an overnight sleepover because he doesn’t want to bring his brace.  And, you know what?  I tell him to leave it home.  It’s ok to take a night off.  It’s ok to take a deep breath.  Because our kids have to be in this for the long haul – they have to feel like every bit helps, but that one can still be successful when they get things maybe 90% right.  Because the only guarantee in life is that we will fall short of perfection 100% of the time.   And the only way they will believe this is if we believe this.

So, now when I look at my daughter from an angle that shows her a-symmetry, I sit and marvel at how what I viewed as an imperfection is really a very beautiful thing.  My daughter taught me that she was proud of her surgery scar.  She is proud of how strong she is.   And, when my son comes at me with his frequent “hug attacks”, and I can’t fully embrace him because he is encased in his brace, I marvel at his tenderhearted strength through it all.  And, now it’s impossible to see them as anything but perfectly imperfect.  They are perfectly imperfect, our family is perfectly imperfect, and the reality is that I wouldn’t have it any other way.


How a Scoliosis Brace is Made

This week, I want to show you, step-by-step, how a brace is made, using our recent experience at the National Scoliosis Center (NSC).  Not all braces are made this way, but, in my opinion, the best ones are! 🙂  And, it makes the experience much more fun for the children when they can take part in making their own brace!

First, detailed measurements are taken of the patient, including a full digital scan of the torso.

Measuring, measuring…by the way, that is NOT an EmBraced In Comfort tee – But, my picky patient changed into one, though, as soon as he could 🙂
Measuring rotational angle
Scanning the body with a scanning “gun”
It’s fun to see your body appear on-screen!

Next, the patient picks out a pattern from many exciting choices…

Picking out a pattern. Fun!

Then, the plastic is inserted into the oven and the tissue with the pattern is adhered…

The plastic is hot and ready to come out of the oven
Preparing to place the tissue on the hot plastic
Pressing the pattern onto the hot plastic
Peeling the color application sheet from the hot plastic

Then, Luke and his associate, Michael, use a foam replica of the patient’s body (which was carved on a digital machine, using the digital scan they obtained earlier), and they lay the hot plastic on it. They work quickly to trim away the areas they will not need.

A foam replica of the torso is created
Laying the plastic on the mold
Luke is always willing to do what it takes to make a great brace – even laying on the floor to complete a task!
It takes two to trim the scrap off while the plastic is still hot. They work so well together!

Then, there’s this…

Playing with some hot plastic scraps

Back to business now…Once the plastic cools, Luke tries it on the patient and makes marks where he intends to trim…

Trying the brace on for first fitting
Honing the details

Then, he uses a special trimming machine to cut the plastic off at his markings…

Trimming edges along the cut lines

Next come the rivets for the straps…

Inserting rivets
Pressing the rivets into place

Then, Luke spends a lot of time smoothing the edges (not pictured)

And, more fittings and more fine-tuning…

Using a heat gun to work on uncomfortable parts
Using a handheld torch to soften some “pokey” parts

Finally, they get an in-brace X-ray in the very high-tech and rare EOS machine, which gives wonderful, 3-D images with extremely low radiation levels.  Very few facilities in the USA have an EOS machine, but National Scoliosis Center makes a point to have the healthiest and best technology for the patient…

EOS x-ray machine! State of the art – nothing but the best at NSC!
The Left side is the in-brace EOS image, the right side is the pre-brace, regular x-ray image

In our case, even though we got great correction in-brace, Luke wanted to further hone under the right shoulder to help relax the right shoulder and bring it down to a more symmetrical level.

After the brace was finished, we went home to spend the night in it and then returned to the National Scoliosis Center in the morning to make sure that it was fitting just right!  Luke and his team can get your patient into a custom-fit brace in just under 2 days!!  Wow!

Although we stay with family when we visit the NSC, they do have excellent group rates at a nearby hotel AND are just blocks from a Metro station.  My son got measured for his brace first thing in the morning, then he and I hopped a train into DC, spent a few hours wandering around the city, then headed back and helped Luke create the brace – all in one day!  You can combine a trip to the NSC with some wonderful opportunities to explore our Nation’s Capital.

I tell parents over and over – you will not be disappointed with your results from NSC.  I will be sure to keep you all updated on my son’s results as we progress into the 6 month mark.



Bracing at the National Scoliosis Center

This week starts a two-part blog series on my recent trip with my son to visit the National Scoliosis Center in Fairfax, VA.  I’ve written several articles on the work of the talented Orthotist Luke Stikeleather, which you can read HERE, HERE, HERE, and HERE.  However, this was our first visit in a few years, and our first ever visit to his new clinic.

Vaughn and Luke at the National Scoliosis Center


Luke creates a type of brace called the Rigo-Cheneau TLSO.  Between my son and daughter, we’ve probably had him make 7-8 different braces, and we’ve never once been disappointed.  I have always described him as a blend of Orthotist and artist, fitting each patient meticulously.  The other benefit is that he makes the braces in-house (and sometimes lets the kids help!), so his turnaround time is between 2-3 days.  This makes it simple for families (like us), who are coming from out of town.  I will have more on the actual process of making a brace in next week’s article.

The first time my son went into one of Luke’s braces (several years ago), he was at a 25 degree curve.  Luke recommended that he brace full time for a year, and, after that year, my son’s curve was decreased to 11 degrees. We then had him make another brace, which my son wore only at night for another year.  After that, his curves stayed put for over three years, until he had his growth spurt this year. Now he is back to 25 degrees and ready for another year of nighttime bracing.  We are very hopeful that he will have the same results this time as he did last time.

When we started planning our trip to Virginia, my son was not very happy about it.  But, we were both looking forward to seeing Luke again.  This time, I decided that I was too tired and busy to make the long drive by myself, so we cashed in some frequent flier miles and decided to fly to the area.  My Aunt and Uncle live about 20 miles from National Scoliosis Center, so we usually stay with them while we are in town.  We decided to fly out a few days early and do some visiting with family, because I wanted to work in some fun time.  I asked my son what he wanted to do on the trip, as well as where in DC he might want to visit, but he was only interested in Pokemon Hunting (Playing Pokemon Go).  Since it was HIS trip, Pokemon hunting is what we did!  He had his most successful days ever, including finding a nest of Growliths right at the Washington Monument!

Vaughn hunting Pokemon by the Washington Monument – we were blown away (literally AND figuratively….brrrr!!)

All in all, we had a great trip, and he is adjusting to his brace nicely.  It usually takes 1-2 weeks for the soreness to subside, so he is still feeling a little achy.  I would compare it to when a child first gets teeth braces.  They are annoying and sore for a few weeks, but then they get used to it.  They really do get used to it quickly!  Emotionally, it is different for my son to process the change, since he was 9 the last time he wore a brace and now he is nearly 13.  Everything is harder when you are 13.  But, he’s working through it and doing a wonderful job.  He grumbles when he has to put it on, but he has been very responsible about his 12 hours in the brace every day.  And, I told him that he better not complain around his sister, since she had to wear a brace full time for many more years than he has had to.  It’s all about perspective.  Yes, we are disappointed that he had to go back into a brace, but very grateful that, through wonderful bracing and diligence on my son’s part, that his curve is still very low and manageable.  And, we are so very grateful that someone like Luke Stikeleather is part of our medical team, a man full of compassion, kindness, and who is on a true mission to help Scoliosis patients. You will not be disappointed if you also choose to add the National Scoliosis Center to your medical team.

Preliminary results – pre-brace on the right and in-brace on the left – excellent correction.  Note: more brace tweaking was done AFTER this x-ray to help bring the right shoulder down and create even more correction.

Uncluttered Desk, Uncluttered life


Clutter really, really stresses me out.  I know this about myself, yet, despite last week’s rant about taking care of us (the caregiver), I had a very messy desk going into the week…actually, it was a mess since the new year.  I was also VERY stressed – like, experiencing physical symptoms of stress.  It’s true, I juggle a lot.  My “big items” include:

  1. Taking care of two kids with special needs (Scoliosis), one that I am flying out of town with next week to get a new brace!
  2. Managing a business that supports and comforts Scoliosis patients
  3. Playing in a great band (My fun!…but still work)
  4. Taking Karate classes with my son
  5. Heading up my son’s First Tech Robotics team at school
  6. Getting my daughter to her many events
  7. In some times of the year, being in or helping to direct Musical Theater
  8. Trying to eat well and exercise (a constant time commitment)
  9. ETC

But, the fact is – we ALL juggle a lot.  And, the stress really takes a toll.  A wise person said to me on Tuesday “What CAN you do, right now, to reduce your stress?”  Well, she also told me to STOP TAKING ON MORE STUFF, but I have already been trying to do that (I have this thing about honoring my commitments, though, so it takes time)  Anyway….my answer to her was that I really needed to get my office organized and my desk cleared off.  It seemed like too simple of a task to really have benefit, but, when I vocalized it, I realized that it would help a  lot. And, I needed more photos of kittens in my office and a cute kitten notebook to write my to do list on, but that is besides the main point here.  So, that day, I invested a bit of money in organizing tools (and a kitten calendar and notebook, of course), and, now, Friday evening, I can say that I left my office with just as much to do, but much less stress about it. Walking into my office makes me feel peaceful and productive instead of crushed by stress.

But, this is just what works for me…today.  This isn’t going to work for everyone.  But, the fact remains that sometimes we need to pause, take stock of what ONE SIMPLE THING we can do to feel like we are more in control of the crazy to-do list, and take the time to do that one thing.  Those of you dealing with a new diagnosis of any illness, whether it be Scoliosis or another malady, may feel completely overwhelmed with information, data, questions, fears…you name it. But, just remember that your person won’t be healed (or completely fall apart) in one day. Or one week.  Take a few moments to think of what YOU need to feel more in control, and take on that one item, so that you can better deal with the mountain you have to climb.  You may find that it’s just what you need to get over the initial ridge.

EDIT: by the way, a great tool that I also use for organization is TRELLO.  Look it up – it’s an app for your phone or tablet, too, and you can organize your life into “boards” and each board has “cards” and each card has a list – you can put employees on there, family members, etc. And, you can coordinate projects and information.  Great tool, and it’s free.  You can find videos about it online.  Happy organizing…