Surgery Convert? Not just yet.

Well, as I sit down this week, and try to clear the murky waters of my business matters out of my head to focus on other, less urgent, matters that are truly important to me (educating myself and others on Scoliosis issues), I ended up with a case of writer’s block. For the first time, ever. It might be all the other aforementioned issues that, despite my best efforts to toss them aside, are still plaguing me. There are many, many discussions out there on current reasearch, bracing, and treatments, there are blogs to read, facebook pages to look at – information on Scoliosis is NOT hard to find. I guess I was looking more for inspiration, not information. I was greatly surprised, then, when I started reading an article on Scoliosis surgery. I usually skip those, as I don’t usually consider surgery as an option for my kids. At least not yet. But, I was reading one blogger’s comments and she said, “Let’s face it – some of us just end up needing surgery.” Isn’t that the truth? And, it’s never been my intention to say that those who elect surgery are “wrong” or “bad” or “misguided”. If they did all the research and still chose surgery, then I applaud them for finding out what was best for them and sticking to it! There’s a lot of pressure out there in the Scoliosis community! Whew!! 🙂

Seriously, though, the article was what I needed because, even if we are personally adamantely opposed to surgery for our two kids, the fact is that they are both very young and we cannot see into the future and what urgent needs may arise for them. If they don’t complain of pain and can fully use their internal organs, then it’s a pretty simple decision. But, if one starts losing lung function, well – it would be a totally different matter. So, it was nice to read an article about promising research in the area of Scoliosis Surgery. You can read it, too, at http://www.sciencedaily.com/releases/2011/04/110405093654.htm. The basics are that the technique the surgeons are using now (fusion) is much different than the rods of yore. But, the good news is that they are getting a little bit of long-term data – the fusion is not weakening the other parts of the spine (at least over 10 years) and the patients are showing a high degree of comfort. So, this is good news. I want patients to be comfortable, whether it’s in their braces, or post-op. Who knows – someday we may be faced with this option and it’s good to know there is hope at the end of what seems like a very scary tunnel. I know many of you may have already had surgery and I sound like a regular scaredy-cat. I have relatives who can’t understand why I don’t just do what my wonderful Doctor says and not worry about it. I guess I figure that surgery is a huge wild card – and my question ALWAYS is: Will my kids have more or less pain after having surgery? They aren’t in pain now, so the answer is easy. But, as time goes on, the answer may become more difficult. And, who knows how much pain they would be in after surgery? I’ve heard great stories and very tragic ones. But, the good news is that no matter what method of treatment you choose, there is hope. And, for me, to realize that about the prospect of surgery is BIG! But, don’t consider me a convert to the idea any time soon. I remain convinced that non-surgical treatments are by far the best place to start (and remain) until there is an excellent reason to do otherwise. But, it’s always a good thing to educate yourself on the pros and cons of the treatments you don’t choose, so I figure one article that discusses surgery isn’t necessarily a bad thing.

Have a great week!

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Happy Easter

I shouldn’t really be publishing this today, as it’s still Good Friday, but I’ll be with family the next two days, and I think it’s important to take time and consider what this week means in the overall scheme of things. Yesterday we remembered Jesus’s last supper with his disciples, his time in the Garden of Gethsemane, and today we remember that horrible, black, dismal day of his torture and death – not for what he did, but for what WE have done. And, Sunday is the glorious day of his Resurrection! It is the meaning behind it all – the reason he came at Christmas, healed the lame and sick and inspired so many while alive, and the reason he had to die such a brutal death. All this was leading to the ultimate gift – resurrection of the dead and life everlasting.
On a personal note, this is the first Easter I have not been overcome with my own personal dark shadow over the day. I guess time lessens all wounds, as they say. It was the day before Easter in 1996 when I got the call that my Mother had died unexpectedly. There were many amazing things that God did during this time to reassure me of his plan for me and his assurance of life after death, but I didn’t miss his greatest gesture – reminding me that just as he found a wonderful life everafter, so will he take care of my Mother until we meet again. 15 years is a long time – but this is truly the first year I haven’t equated Easter with her death. It’s nice to now remember what a celebration Easter truly is – and I celebrate for her, too, as I know that she has all her needs met in Heaven and waits for me until the day we can see each other again.
A Blessed Easter to everyone. He is RISEN. He is Risen INDEED.

Agreeing to Disagree with your Medical Professionals

Every parent of a child with special needs – or any patient with those needs, for that matter – has experienced it. A trusted Medical Professional looks at us and tells us something we’d just rather not swallow. Sometimes it’s because we are in denial – we don’t want to believe what they are telling us. But, sometimes we just disagree, plain and simple. I’ve told parents this time and time again – it’s your job to research options and advocate for your child, and sometimes that involves disagreeing with our Doctors. In the field of Scoliosis, you can have many well-educated, experienced, well-meaning professionals in your team of caregivers, who all have differing opinions on what is best for you (or your child). We’ve had this happen with our Orthopedist – she is a VERY knowledgeable, caring, wonderful surgeon at University of Michigan. We are blessed to have her on our team, but she and I both have an understanding about each other – we disagree on the necessity of surgery. We also disagree on the potential of treatments like chiropractic, Pettibon, and bracing. I respect her greatly, I rely on her for her medical opinion, but we are both satisfied that, for now, we agree to disagree. She’s not wrong necessarily – she has performed many surgeries that have been very successful, the patients are better off afterward, and all is well. But, since surgery is not right for us, we deny the dire need of it. She also disagrees that there is any proof that bracing works long-term. She supports our desire to have the bracing (or therapy, or whatever else I want to try and need a script for), but she doesn’t believe it will work, based on the studies she has read. Well, as Luke pointed out the last time we drove 12 hours out to see him in Washington, DC, there may not be the studies out there that our Doctor relies on, but it doesn’t mean that he doesn’t see great things happening to patients every single day. What does it matter to me anyway if there is a large study proving one things works or another? I just need something that will work for 2 specific patients in my life. (Not that I don’t care about ALL the patients I work with, but I will always think first and foremost of my 2 kids) 🙂 Seriously, though, just because we don’t agree with a certain medical professional, and just because multiple professionals we know and trust don’t agree with each other, doesn’t mean we need to side with one, or prove to one or another that they are wrong. That’s just exhausting and unfruitful. Because the fact of the matter is that different things work for different people, because we are all so blessedly unique. Everyone truly thinks they are right and truly wants to help their patients (at least all the people I deal with), so it is up to the patient (or their parent), to make an educated decision and move on as best as they can with the information they gleaned from all parties. It can be a real mess to wade through the opinions, and I’ve had many sleepless nights (and many more to come) wondering if I’ve made the best decisions for my kids, but I have found that when I do make a decision, whether it’s wrong or right, if it’s based on my values and beliefs, I have a peace about it. In the meantime, do your homework, talk to your medical team, get online and chat with other parents, and, if you feel inclined, pray about it. I found one great site recently that I hope to have more time to explore: http://www.scoliosisjournal.com/articles/top/browse.asp They have the top 10 most accessed articles about Scoliosis – you have to wade through the medical jargon to figure them out sometimes, but it can be comforting just to spend some time every week educating yourself. And, the nice thing about Scoliosis is that you can start a course of treatment and change it, or you can do many different treatments simulataneously. Also, it’s a slow progressing disease, so you can start on a path, keep learning and researching, and then change course if you need to. But, I want to encourage everyone to agree to disagree – be polite, respectful, loving toward those who don’t feel as you do, but maintain those relationships with those you disagree with, because they will all be useful to you in one form or another.

Have a great week.

As for that Lenten resolution…

Well, I had another topic to write on today, but I have been experiencing that type of day today that requires every ounce of willpower and determination. I was looking back on my last few blog posts and saw the one that I publicized my committment to refrain from worry about the future for the 40 days of Lent – to let go and let God, so to speak. Well, I am happy to report that I’m doing OK on it. One of the main reasons is that I can’t get past my worries for the next few days long enough to even THINK about the long-term future. As a result, I have felt the stress over that long term picture fading as I realize that every day requires patience, perserverence, and the willingness and ability to constantly change the plan. Just when I think I have one thing worked out, something mysteriously changes and sends me back to square one – be it how a machine is spreading on elastic, how a child is handling their brace, or how an x-ray is progressing. Every time I think I have it figure out, have a method in place, or only the fine details left to tune, BAM – something unexpected happens and I’m back to square one. I can build on what I’ve learned, but I have to keep re-writing the solutions. And, I’m sure this will continue…well into the future. So, why worry about a future that is in constant flux anyway? I guess that’s the lesson for me these 40 days – just worry about the issues on your plate today and tomorrow, prioritize eating well, sleeping, and exercising (or nothing comes together right), and be willing to change…constantly. I don’t know where the phrase came from, but it’s always sticking in my head – “The only thing constant in life is change”. So, I try to make my expectations match – if I expect change, expect challenge, expect the occasional disappointment (and the occasional pleasant surprise), then I won’t be disappointed or frustrated or even overconfident when these things happen. They just happen – so when the problems were coming at me every 20 minutes today and I was constantly coming up with what I thought was the “solution”, what I really needed to tell myself was…”bring on the next problem”. Maybe then I would have felt I actually accomplished something. 🙂 So, bring on the next day, the next set of problems, and maybe even the next pleasant surprise…I am ready to walk in faith, constantly change, and, hopefully, constantly improve.

Using the Restroom in the Brace

Pee pee, poo poo, potty, #1, #2, whatever you want to call it – everyone does it, but it seems everyone is embarrassed to talk about it. The funny thing is that it was the first question I asked as my 6-year-old daughter was being strapped into her Spinecor – “How the heck is she supposed to use the restroom in that?” The answer was a well-meaning, “I have no idea”. Well, it was also the question that birthed the whole concept of my EmBraced In Comfort bodysuit and entire company, come to think about it. So, I guess I figured yesterday, when discussing potty issues for the upteenth time with parents and medical professionals, that I’ve never actually devoted a blog entry to the subject. But, I know it weighs on a lot of parents’ and patients’ minds. I guess my solution for the Spinecor has always been to use my bodysuit, in conjunction with either the strap bottoms, or a modified version of the Shorts bottom of the Spinecor. With the hole in the shorts bottom cut open, re-finished, and a moleskin pad added to the edges, a patient can comfortably wear the brace all day, with just the bodysuit underneath. The bodysuit is their underwear. But, a medical professional informed me yesterday that many of his patients prefer to remove the entire brace to use the restroom (or at least the bottoms), for fear they might soil themselves. Although the bodysuit has a generous hole, made more generous by pulling the flap behind (it’s designed to expand even more for the less-occasional #2), I respect the fact that this may seem plain weird to many kids and adults alike. In my daughter’s case, it was a necessity, however, because she could NOT operate the brace on her own – she couldn’t even operate the snaps on a traditional one-piece bodysuit. And, frankly, if she could, she would not want to be bothered by such a cumbersome task as taking EVERYTHING off EVERY time…I’d never get her to drink water! So, the EmBraced In Comfort bodysuit has always worked for her…and my son…and many others. So, maybe the issue is that it’s better suited for the younger patients, but I guess I’m curious to know (if you’re willing to share), how other patients deal with the dreaded elimination issue. When we progressed to the hard brace, she still found it easier to remain in the bodysuits – even hard braces come down over the hips and are difficult to scoot underwear down from underneath. Or, maybe it’s just because she’s been so comfortable in them for so long that she just figured: “why change what’s working?”. Plus, since she doesn’t have to wear additional underwear underneath the hard brace, we don’t have elastic pressing into her skin anywhere, so the brace remains very smooth against her skin. But, again, all I have to go on is my two children in their Cheneau braces and a handful of parents who’ve openly discussed the potty issue with me. So, please – email me, comment on this post (if you dare) 🙂 – but let me know what works or doesn’t work for you. I have the luxury that everything we make and design is done right in our offices, so we can easily change, modify, and improve our products based on customer feedback. We are here to serve the patients in braces to the best of our ability, but we desire feedback in order to do it beyond the best of our ability. So, keep the comments, questions, concerns, and other issues coming our way – not only do we not mind, but we appreciate the feedback. Just – no potty mouths allowed! 🙂