I bet if you are reading this you probably have a child (or yourself) in the throws of VERY stressful spinal checkups and bracing and you are thinking that the author of this title is a bit crazy (or insensitive). Well, read on…I only feel I have the right to say this because many years later, I am finally looking back on all those many stressful visits to the Orthopedic surgeon and now I can actually say that I DON’T lose sleep for nights before we go. It’s a novel concept. So, the point of this post is – there is HOPE! Many parents call me or email me (or post responses to blog posts) and it’s almost hard for them to get the words out – parents are so OVERWHELMED by this disease. And, most people that parents of Scoliosis patients (or the patients themselves) encounter do not get it – first off, many don’t know what Scoliosis is. And, when they find out, most cannot help but think “well, that’s not SO bad”. Hey, I get it – it’s not Cancer (thank the Lord). But, it is a VERY big deal when you first get a diagnosis and VERY stressful for a long time afterward. We just happen to FINALLY be at a point where we can breathe a sigh of relief. I call it the “eye of the Scoliosis hurricane”. We know there was a lot of difficulty behind us, and we know there is a good chance there will be ahead of us, but in the brief, calm respite in between, we will be thankful for a bit of peace.
We went last Friday for the kids’ checkups – for my daughter, it was 3 months post-surgical. Everything looks great. She still has a left shoulder that protrudes up a bit (and the muscles are very tight and her Mom needs to spend more time massaging them!). But, she is doing great otherwise. No pain, and very little tingling in the extremities. She is allowed to run and jump now! She was so happy, she ran out of the Doctor’s office and around the parking lot before we made the drive home. She is still not allowed to lift more than 10 pounds or twist, but running is fun when all you’ve been allowed to do is walk in straight line. As I mentioned in previous posts, the Doc is still not recommending any additional bracing. This will be the first summer in about 5 years that she can go without a brace! She can wear whatever she wants – tank tops, sundresses. Whew! She has earned it!
My son is also doing great. His curve has stayed about 12-15 degrees (down from 25 a couple years ago, thanks to proactive bracing and an expertly-made Rigo-Cheneau brace). He’s been down to this level for over a year. He only gets an x-ray once a year now, so the checkup was mainly visual and with the Scoliometer. The Scoliometer reading actually improved 1-2 degrees, so the Doc thinks he may be improving still! Because my daughter had weakened vertebrae from so many years bracing (an unfortunate side effect of a necessary treatment), we are not having our son do proactive nighttime bracing for the time being. While his curve is low, we want his spine to re-strengthen. So, that means no bracing for either one until a time that is to be determined. Wow. I have to say, tackling this S-word (Scoliosis) every day for the past 6 years has become a way of life for me. It is very odd to have the bracing and other aggressive therapies off our plate for now. (Along with the fear of surgery – a BIG stress off my plate).
Many of you reading this are just starting your journey, looking for answers. I want you to know that I understand where you have been – I’ve been there and I don’t minimize your struggle. I am here for you so you can learn from the mistakes and the triumphs we have had. And, I will continue to blog and communicate. But, I am also taking a little time to enjoy the “eye” of our storm…while it lasts.
Scoliosis Family Adventures 
It’s funny, when I saw the title of your post, I knew exactly what you meant! My son is only wearing his brace 4-6 hours a day now, and if all goes as planned, he will be out of it by July! I remember back when we first got the diagnosis, and how stressed I was before each visit. Time sure flies. I can’t believe it’s already been 3 months since your daughter’s surgery. I know she is happy to be able to run again!
That is funny that you understood right away. I am so happy to hear of your son’s progress! And, thanks for reading and keeping me posted.
So glad to hear your good news, Tina! My daughter Sarah has her surgery Tuesday morning. I’m hoping she gets to run after three months too—doc is saying it will probably be six. 😦 Thank you for your blogs–they give us hope!
Well, you can always plan for 6, but hope for 3. The time will fly, although in the first couple weeks it won’t seem to be the case. I look forward to hearing status updates on how Sarah is doing…feel free to email me, too, if you need someone to vent to while in recovery. I will pray for a great outcome! 🙂
Dear Tina, I have just looked through this awesome blog for the 10th time and your embraced in comfort website and I absolutely love it. My name is Michelle. I am from Sydney Australia. My ‘mother’s intuition’ picked up a 6 degree curve (by eye) in my 4.5 year old daughter’s back in August 2012. Now, at 6years and 2months .. the curve has progressed to 22 degrees. After sidestepping the Orthopaedic surgeon’s suggestion of a Boston Brace …. The past 2 weeks has been full on and my head is constantly ruminating ideas. I am a neuroscientist and lecture anatomy (including of the spine and spinal cord .. would you believe it) and so my thoughts on this are so deep they envelope my dreams. I went provately to the Sydney Scoliosis Clinic and we now have a shiny new Rigo-Style-Cheneau brace from Ortholutions in Germany .. In an pink, purple and yellow pattern right in time for Easter. The prescription is that it is to be worn for 14 hours a day, but not at school. We started with 2 hours the first day, 4 hours the next and today, including day sleeps she’s knocked over 7.5 hours, so we’re halfway there. Sleeping in the brace seems to work well for her and we will certainly be purchasing some of your wonderful Bamboo blend undergarments to keep us going strong. It is going to be a long haul, but I couldn’t have hoped for a more mature and realistic 6 year old. I am terribly proud and we looked at your website before bed tonight to choose some undershirts :)). I would be delighted to talk more with you Tina, though I appreciate how busy you must be. Congratulations to your daughter and you, your husband and son for getting to the eye of the storm!! It’s people like you who literally change lives with your openness and your wordsmithing. Thankyou. Hopefully this message will send and we will be connected in cyber space. My very warmest regards to you and your beautiful family and I wish you every success in your business and your goal of changing the lives of scoliosis patients everywhere. I am looking forward to keeping in touch more if you are interested. Blessed Easter to you all,
Michelle
Thanks, Michelle. I really appreciate all those kind words of encouragement. It really keeps me motivated to know that what I say actually is read and – even better- helps others. 🙂 I am always happy to email chat. Send me an email (comfort@embracedincomfort.com) or FB message through my Embraced In Comfort Facebook page “EmBraced In Comfort (Garments for Scoliosis Braces and more)”.
As for your daughter, wow – excellent job finding a 6 degree curve by sight. I was so oblivious that I didn’t notice my daughter’s until about 20 degrees. 🙂 Also, good move going with the Rigo Cheneau brace. I look forward to seeing how it works for you and am happy that there are places to get them in Australia. I will keep a look out for your order online and – possibly – from an email once in a while to “chat”. 🙂
Have a blessed Easter,
Tina