This has been a very hectic month! The seasons are changing, the people in my life and work are changing, and we are making a huge product changeover at EmBraced In Comfort! Whew! Maintaining balance is tough. In addition, I’m still trying to map a course for my son’s next brace – figuring out possible travel, expenses, timing with his crazy growth spurts, etc. It can get overwhelming and difficult to find balance. But, I try to remember that this is a marathon, not a sprint. I try to remember that my family is the reason for it all. I know how important your families are to you, too. I wish you a very happy holiday season! May you be blessed in abundance. See you in 2018!
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 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”.
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!
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.
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.
Next, the patient picks out a pattern from many exciting choices…
Then, the plastic is inserted into the oven and the tissue with the pattern is adhered…
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.
Then, there’s this…
Back to business now…Once the plastic cools, Luke tries it on the patient and makes marks where he intends to trim…
Then, he uses a special trimming machine to cut the plastic off at his markings…
Next come the rivets for the straps…
Then, Luke spends a lot of time smoothing the edges (not pictured)
And, more fittings and more fine-tuning…
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…
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.
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.
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!
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.