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.

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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.

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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 🙂
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Measuring rotational angle
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Scanning the body with a scanning “gun”
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It’s fun to see your body appear on-screen!

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

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Picking out a pattern. Fun!

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

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The plastic is hot and ready to come out of the oven
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Preparing to place the tissue on the hot plastic
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Pressing the pattern onto the hot plastic
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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.

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

Then, there’s this…

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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…

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Trying the brace on for first fitting
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Honing the details

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

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Trimming edges along the cut lines

Next come the rivets for the straps…

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Riveting
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Inserting rivets
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Pressing the rivets into place

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

And, more fittings and more fine-tuning…

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Using a heat gun to work on uncomfortable parts
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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…

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EOS x-ray machine! State of the art – nothing but the best at NSC!
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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.

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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!

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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.

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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

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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…

 

Who cares for the caregiver?

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We, as Moms (and Dads), have all heard it before – the proverbial “put your oxygen mask on first” scenario.  It is hard enough as a parent to act on this, though, and much harder for those of us that are taking care of kids with special needs.  We KNOW we should be taking care of ourselves, because we KNOW that NOBODY else will if we don’t, but we still have lists full of calls to make, research to do, appointments to schedule…plus regular life…it’s endless.

I am here to remind you, though, that it is important.  You MUST give yourself permission to take care of yourself.  It’s a new year and we all have those new resolutions floating around.  As ALWAYS, mine is to win the fight over my eating, to loose those pounds that have been haunting me for years.  But, let me tell you, it takes WORK and, often, I have to let other things go so that I can meal plan, cook healthy, etc.  And, sometimes (bad Mother alert here)…I have to let go of trying to make my kids eat as healthy as possible so that I can continue to eat healthy.  Yes, yes…I know…the kids should eat what I eat. But, as wonderful as my kids are, I always win the “my kid is a more picky eater than yours” showdown, and some days it’s HARD to pick that battle.  So, I can spend hours trying to win the battle with them, or I can continue to chip at the war within me. Sometimes I can’t do both.  It’s tough to accept that I have to sometimes literally put my health over my kids’ health. What kind of Mother does that?  Well, the kind that realizes that I am the ONLY one who is going to prioritize my own health. And, the kind that realizes that, in the big picture, a healthy Mom will better be able to help her kids be healthier.  I lose a few battles in order to win the ultimate war.  I invite you to become my battle ally – let’s encourage each other in our daily battles of fighting Scoliosis, or whatever other issue plagues our children.  Because, hopefully if we keep reminding each other, eventually we will give ourselves that permission to look out for #1 just a little bit more.

Focusing on the important in 2017

Hi everyone.  I must admit, I’ve been lax.  The last few months have been a flurry of insane activity, as we deal with normal life with a middle-schooler and a high-schooler, and two parents with demanding careers.  Add to that a large boom in business (thanks to all you Scoliosis warriors that have tried and enjoyed our products!)…and, well, certain things (like this blog), unfortunately, fell to the wayside.  When busyness sets in, it seems nobody is safe from turning away from the “important” things and focusing on the “urgent”.

One of the required reading pieces in my college Entrepreneurship class was Stephen Covey’s The 7 Habits of Highly Effective People.  The concepts in this book have always stuck with me (and I probably need to re-read it), but one of the points I remember most is the concept of the “important” vs. the “urgent”.  You can read more on that HERE, but, basically, the important things are those that have great benefit in the long run – those that help us achieve our goals.  And, urgent tasks are those that have immediate consequences if not done.  Sometimes urgent tasks can be important (crying baby, anyone?), but it’s the important tasks that are NOT urgent that are easy to push by the wayside.  For me, that is healthy eating, spending quality time with those I love, and nurturing relationships with other Scoliosis families.

We are all guilty of it – we let our health slide, our friendships fade, our spiritual development fall to the wayside, in the pursuit of a few moments apart from the never-ending “to do” list.  But, as I was driving today from one activity to the next, I realized that ignoring those important things will eventually come back around to haunt us.  Our energy fades as we ignore our health, loneliness sets in when we ignore our relationships, and, when trials hit, we forget how to cope when we let our spiritual development lag.

Our family had been moving at a crazy pace for months, when we decided to head to Ann Arbor, Michigan in late December for 24 hours of family fun.  We were combining a little get-away with the kids’ annual Scoliosis checks.  We figured our years on “hiatus”, that we had become so used to, would continue.  We knew that our son had a tremendous growth spurt this year (3 inches!), but his curves had been so minimal for so long – I just got used to the comfortable place of moving outside the Scoliosis world.  But, alas, our hiatus is over – our son’s curves have increased.  Thankfully only to 25 degrees, but still substantial enough that we need to go back to nighttime bracing.  After over 3 years of no bracing for either child, we are headed on a trip back out to see Luke at the National Scoliosis Center to get a shiny new brace.  BAM, our crazy frenetic pace has been interrupted, as we are brought back into the Scoliosis world full-force.  Mind you, I never really leave it – I am in it, day in and day out, as I help OTHER families through their struggles.  But, now, just as I became complacent when it came to our own family, we are back into it with a vengeance.  And, it reminded me that I have to focus on the important things, as I tackle the urgent. I need to continue to reach out to you, my virtual Scoliosis family, as our immediate family journey continues.  I pledge to write to you more, and I hope you write to me more.  Feel free to reach out through this blog or through my EmBraced In Comfort facebook page. Let’s continue to support each other, as we resolve to live our crazy, frantic everyday lives, while dealing with the important task of treating and improving our Scoliosis.

Supporting families of scoliosis patients.