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.

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Will God Choose to Heal My Scoliosis?

Hi everyone.  This is Tina blogging today.  Today I want to talk about an issue that many of us contemplate – will God choose to heal my Scoliosis (or other ailment)?  Or, more truthfully – why hasn’t He healed my (or my child’s) Scoliosis?  This is a question that is universal to any ailment you or a loved one may suffer from – it’s the spiritual struggle that many of us have when dealing with a malady.

Sitting in church the other day, I was listening to the Gospel lesson from Luke 13 (10-13).  The passage is as follows:

10 On a Sabbath Jesus was teaching in one of the synagogues, 11 and a woman was there who had been crippled by a spirit for eighteen years.She was bent over and could not straighten up at all. 12 When Jesus saw her, he called her forward and said to her, “Woman, you are set free from your infirmity.” 13 Then he put his hands on her, and immediately she straightened up and praised God.

I heard this lesson many times before in church, but this time was different – what struck me this time was that the woman “was bent over and could not straighten up” – was it possible that the woman in this story had some form of Scoliosis?  And, then I got to thinking…Jesus healed that woman without faltering.  No hesitation, whatsoever.  Therefore, He clearly thought that the suffering from Scoliosis was dire and in need of his miracles.  The second was that he healed her very quickly – she didn’t even have to ask!  So, why is it so hard for the rest of us to get such a miracle, when we are praying daily for it?  Many of us have legions of people praying for our ailing family member, but some of us don’t get the full-out healing miracle we are really asking for.

So, that begs the question – is it possible that God sends healing in many different forms?  Is it possible that he puts all sorts of “puzzle pieces” together for us, so that we can get the help we need from many sources, in ways that equal up to the healing that he intends for us?  And, then I got to thinking about how strongly He put the ideas and the know-how into my heart to start EmBraced In Comfort.  I can look back on my life, at all the skills and seemingly unrelated bits of information that He brought into my life, and see how it all came together to slowly, but surely, chip away at the discomfort experienced by brace-wearing patients and to help them experience the healing they need without the discomfort from a brace.  There is no way that little old me would have come up with an idea that would have grown to what it is without God’s intervention.  And, that is pretty awe-inspiring – in other words, we can all contribute to the healing of each other in some small way.  What is He putting in your heart today?  How can you help others?

Let’s look at some other of His instruments in the Scoliosis World – Dr. Morningstar (and his fellow Scolismart Docs), who have come up with unique and ingenious new therapies for Scoliosis, helping many people and turning traditional treatment plans upside down.  And, for us, one of our “angels” was Luke Stikeleather, at National Scoliosis Center.  Luke (how fitting that his name matches this book of the Gospel) was able to make a brace that worked wonderfully for both of my children, but, for my son, it was a contributing factor (along with other therapies, like pre- Scolismart work with Dr. Morningstar) to bringing his Scoliosis down to where it WAS, in all respects, “Healed” (brought down to 10 degrees).  It still exists, but not much more than 15 degrees.  Yes, he’ll always battle it, but we have a fighting chance now. We have hope. My daughter was not healed, but surgery was prolonged for years through work with both Dr. Morningstar and Luke and, when we felt the need to move to fusion surgery, after years of fighting, she was blessed through a great surgeon (Dr.Li at the University of Michigan) and she is very happy now, post surgery.  Her Scoliosis was not cured, and she will always be plagued by side effects, but she feels healed, she feels stronger, and she feels proud of herself, and those are the important things.

So, my dear friends, your Scoliosis patient is very much worthy of healing and help.  And, God has put many people out there, including you, to be advocates, healers, and comforters to you and your family.  So, don’t lose heart.  He may not put His hand on us all and whisk away the pain, but healing may come in doses, through many avenues, and through people that He places on your path.  Scoliosis IS important to God, and so is your Scoliosis patient.

crippled-woman-healed

Time to Celebrate

Hey everyone! I’m sorry it’s been such a long time since I’ve written. Things on my end have been pretty hectic with vacations and sports. The big vacation is what I’m most excited about.

Two weeks ago, my whole family got on a plane headed for Orlando, Florida. This, if you don’t already know, is the home of the famous Walt Disney World.We got to spend five days down there as a sort of birthday trip for my mom. She even made an awesome shirt especially for the trip! I am so glad my family got to go, and it reminds me of how different some thing were when we went a few years ago.
Okay, before I take a trip down the very foggy Memory Lane, there are a few things you need to know. First, Orlando is hot. The whole state of Florida is just a humid, sweltering tourist trap. Second, while you’re at Disney, you spend a lot of time waiting in lines. Thank goodness most of the waiting is indoors. Third, you do a lot of walking. You might think, “Hey, It’s going to be super hot, so I’m going to wear flip-flops.” Our feet hurt enough while wearing tennis shoes, I can’t imagine what it would’ve been like wearing sandals. Don’t get me wrong, even though all of that sounds pretty unpleasant, we all still had a great time.
The last time my family and I went to Disney World, I still wore a brace. Since I was only supposed to have my brace off for two hours per day, I probably wore it around the parks. (I used the word ‘foggy’ to describe my memories of this for a reason) I think it’s safe to say that no matter what brace you have, you are probably going to get pretty hot when under the sweltering sun for many hours. I know I did. I was wearing a Rigo Cheneau, which is plastic. When plastic is in the heat for a while, it too starts to get hotter. Don’t worry, it didn’t burn me or anything, but it was still pretty warm. Also, if I was on my feet for a while, my back or shoulders would sometimes start to ache a little bit. So, with all of the standing and walking that happened at Disney, I probably got a little uncomfortable at times.
All I can say is that I’m glad that I got to enjoy Disney without having to worry about my brace. We all rode lots of rides (except for my dad), saw some shows, and had a lot of great family bonding time.
As always, remember to comment and send in questions. I love hearing from all of you, it makes my day! See you next week! (Hopefully)
-Cindy
My family and I at Disney's Animal Kingdom
My family and I at Disney’s Animal Kingdom

My adventures with Physical Therapy and Scoliosis

Hey everyone, I’m sorry that this article is a few days late. I don’t quite have a set schedule for publishing posts, but I’ll try to be more consistent from now on. For today, I’m going to answer Fritz’s questions.

For starters, I didn’t just have physical therapy after surgery, I actually had it before, too. I tried a few different types while I was bracing. The first one began shortly after I got my Spinecor brace, and the therapy was based on the brace.  We traveled two hours to University of Michigan hospital to work with a qualified Physical Therapist. This was about 8 or so years ago, so I can’t remember any of it. Personally, I was not a big fan of the Spinecor brace, but I’m not sure if that feeling was the same with the therapy.
After I switched to the Rigo Cheneau brace, I traveled to Wisconsin for a week long session of Schroth therapy at the Scoliosis Rehab. The therapists were worried that I was too young, and that the therapy would be too difficult. When I talked to my mom about this, she says that some of the techniques were pretty difficult for me. The one thing I remember is the reward system. I can’t remember if it was daily or after I completed an exercise, but it’s the thing that stands out the most. The reward was a fake tattoo. I remember being so excited to get one of those things, and I think that definitely helped motivate me. It turns out that those exercises were too hard for me, because I stopped doing them shortly after I got home.
Next came the ScoliSmart therapy. This is one that I kept doing until just before my surgery. There were things that I liked and didn’t like about this therapy, but overall it was pretty effective. It helped to slow the grow of my curve for as long as possible. One thing hat I didn’t like about this therapy was the adjustments. Every time we visited the office, the doctor would do some adjustments on our (my mom, brother, and I) backs. I’m not quite sure why I didn’t like these, and I don’t know how they work either. I just remember them being uncomfortable. This is my personal opinion, though. My mom loved the adjustments.
A few months before my surgery, I had two therapy sessions at University of Michigan, where I was given back strengthening exercises. At this point I was out of my brace, so the doctors were trying to strengthen my back and shoulder muscles before the big day. These were mostly stretching and involved a lot of exercises with bands. These didn’t bother me, and they probably helped me get over the discomfort I was feeling because of my newfound lack of support after being braced for so many years.
The only therapy that I’ve done after my surgery was during my four days in the hospital. For the therapy, I had to practice walking around the hospital and climbing stairs. I had a strong dislike for these. It was probably just because I was under the influence of a few different drugs, I just wanted to sleep, and walking made me nauseous. I don’t remember very much during my time at the hospital because I was taking a lot of medicine. To leave the hospital, I had to walk a certain distance and climb a few stairs. I completed these, but not without lots of complaining.
I think that a reward system might be good for certain kids doing physical therapy. This motivates, and helps them push past whatever discomfort they might be feeling. This was the case for me, at least. I hope I answered your question. Remember, if any of you have questions, make sure to leave a comment!
See you next week!
-Cindy

Sports with Scoliosis

Hey everyone!

Today, I am going to do my best to answer Jackie Umstead’s question.

One of the first questions I had for my doctor when I found out I was going to need surgery was this: Will I still be able to do sports? Her answer was yes. I play basketball, volleyball, and I lift weights. A lot of these can be extremely beneficial to those with scoliosis. For instance, if you do it correctly, lifting weights can help strengthen your back muscles. Since I wore a brace for so long, my back and shoulder muscles were weak because I didn’t use them much. Now that I’ve started weight lifting again, I can definitely feel a difference. My dad, who also has scoliosis (he never got treatment), says that weight lifting helps a lot with back pain. Another helpful thing to do is stretch. I know that my hamstrings are always tight, and this can sometimes cause tightness in my back. Even though I don’t stretch very often, I should. My doctor recommended daily stretching for me, and I’ve seen other websites that support this as well. Don’t push yourself too hard, though. If you do too much too soon, you could pull a muscle. It’s not fun having a pulled muscle; I speak from experience.

If you are pre-surgery, a lot of doctors recommend swimming because it helps strengthen the spinal muscles in a weightless environment. If you are post-surgery, the first thing you should do is consult your doctor. After searching around a bit, I found that most competitive swimmers go back to swimming after either six months or a year. Their ability to do certain strokes or flips depends on the person and the level of curvature they had. It is also dependent on which part of the spine was curved. Some people can’t do flip turns or the butterfly stroke, others can.

Some sports you have to be careful with, though. Some people don’t recommend long distance running, because it can be very jarring. Sports like gymnastics, tennis, and anything that is one-sided or causes you to twist a lot can be harmful. A lot of these sports are dependent on your type of curve. I can’t do gymnastics because I physically can’t twist around, and I had to stop a few years after I got diagnosed. All of the twisting and bending was worsening my curve.

Always ask your doctor about sports before trying them. I am not an expert, but I dug up as much as I could. If  see anything else on growing rods and swimming, I will be sure to post an update.

Good luck, and see you next week!

P.S.- Here are some websites and blogs that I found.

http://www.treatingscoliosis.com/blog/sports-and-exercise-if-you-have-scoliosis/

http://sport.onehowto.com/article/what-sports-are-good-for-scoliosis-5740.html

http://www.scoliosis.org/forum/showthread.php?7651-Swimming-Competitively&s=dc3d0783329eb9708169dc6ca1f624da

https://scoliosis3dc.com/scoliosis-and-sports/

http://www.cw.bc.ca/library/pdf/pamphlets/BCCH1689_TheGrowingSpine_2015.pdf

Life After Surgery

Hey guys! I just wanted to thank everyone for all of the positive feedback, and for all of your questions. Today, I’m going to be replying to Steve Wainess.

When I first got out of surgery, I was in the hospital for four days. I was asleep for most of that time, and only got up if someone made me. I also didn’t eat very much, and lost around ten pounds during those four days. I had to stay a day or two longer than another spinal fusion patient nearby, because my curve was more advanced than hers. There are many different factors that could influence how long you are in the hospital, so don’t worry if you are in the hospital for a different amount of time. While I was in the hospital, I had to practice walking a lot, which I hated. First, I was walking with assistance. A day or two before I left the hospital, I could walk on my own, but I still had someone next to me.

After I got out of the hospital, I was usually in bed or sitting somewhere comfortable; I only moved when necessary. This went on for about two weeks. My ability to move slowly increased, but I got tired really easily.

My restrictions were slowly removed each time I went to the doctor’s office. Four months after my surgery (I think), I was cleared to run. My mom tells me that I was so elated that I sprinted out of the doctor’s office as soon as I got the ‘ok’. At the six month mark, in June, I had all of my restrictions removed. I only had one complication during surgery. While the doctors were operating, the sensors on the left side of my body were not responding. Because of this, the doctors couldn’t get as much correction done as they wanted, and they had to use more hooks. When I got out of surgery, my left thigh was numb, but it has faded over time. It feels completely normal now. (Mom’s input: the Doctors lost signal to her left leg during surgery while performing the first of 3 osteotomies that they wanted to perform.  Because her curve was so severe (97 degrees), Dr.Li wanted to do the osteotomies (shaving of bone) to get the curve straighter.  Because she lost signal to the left side during the first one, she did not finish the others.  Therefore, we only got a correction to 40 degrees.  The loss of signal could have been from a loose connection, but it was good that they played it safe).

Now, there are very few things that I can’t do. I can’t bend backwards very far or twist from side-to-side, but that’s pretty much it. My back and shoulders surrounding my scar are still partially numb, even after a few years later. Don’t worry, this is normal. I also sometimes get little nerve pinches in my shoulder blade area, but that’s nothing to worry about as well. Of course, if you have any concerns, you can ask your doctor when your surgery date gets closer.

One of the questions I got was this: What is the most important thing to know about spinal fusion surgery? I had to think for quite a while on this one, but I hope my response answers your questions.

It is going to be difficult, and most likely uncomfortable too for a while. I’m not going to sugarcoat this. I know, you’ve probably heard that it’s going to be hard, but hearing it and experiencing it aren’t the same thing. You might get nervous, frustrated, or scared. I went through all of these things, too. As I was in the final hour before my surgery, I was terrified. It’s scary not knowing what’s going to happen next, and realizing you have no control over it is worse. Know this: your family and team of doctors will be there for you and protect you. They will make sure you’re alright. I had so much support from my family and friends, it was overwhelming.

My days in the hospital were extremely uncomfortable, but the doctors always made sure that I was never in pain. While I was recovering, it was extremely frustrating to not be able to do everything you could before. Things like showering and even walking are difficult for the first few weeks, and that can be hard to deal with. Just know that it gets better, that you will get better, and that you will be back to normal in no time at all. Also, I don’t regret getting surgery for one second, because everything was worth it in the end. I feel so much better, so much more alive, now that I have fully recovered. It will be difficult, but you will be so much better off when it’s all said and done.

Remember, if you have any questions, simply ask! See you next week!

-Cindy

Summer Blog Takeover

Hey guys! My name is Cindy, and I’m taking over the blog for the summer. (Maybe longer, we’ll see.) I’m 14 years old, and I’m super excited to be on the blogging team, which pretty much consists of my mom and I. If you haven’t guessed already, I’m the daughter of Tina, the creator of this blog.

Many of you have probably read about my scoliosis story on this blog, but I’m going to share the short version with you anyway. When I was six, I was diagnosed with scoliosis. The doctor said that I had approximately a 25 degree curve. The doctors advised us to wait six months, and so we did. Six months later, we return to the doctor and find that my curve had gotten much worse. (I can’t remember many details, that was a long time ago.) My parents decided to start bracing. I started wearing a Spinecor brace soon after, and wore that for about a year. (This is when EmBraced in Comfort was born.) During that time, however, my curve continued to get worse. That brace definitely didn’t work for me, but we searched for other options.

I started wearing the Rigo Cheneau  brace next. Our Orthotist, Luke Stikeleather, whom I referred to as “Luke”, made my new brace. He is probably one of my favorite people on my medical team, and I still miss him today. Every year, my family would travel to Washington, D.C., which is where his office was at the time. He now works at the National Scoliosis Center.

After wearing the Rigo Cheneau for a few years, we started to see that my curve was progressing again. The Rigo had successfully kept my curve in check for a while, but apparently that time was over. We reached a decision with careful deliberation: I was going to need spinal surgery. Specifically, a spinal fusion, which involved lots of screws, hooks, and a titanium rod. At the time, I had just recently turned 12, and I was scared. A few months before the surgery, I no longer had to wear my brace, because they wanted to strengthen my back muscles before the operation. I actually fractured a rib a few months before, because my brace was too small, and didn’t even know it!

December 2013 was the month when the surgery would happen, and it was here. The date was just around the two-week mark.  I was terrified. Before surgery, my curve was just below 100 degrees. After, it was approximately 45 degrees.  Five awful days later, I was out of the hospital and ready to spend most of Christmas break lying down. Six months later, I was finally cleared to do all activities. It has now been two and a half years, and I’m feeling great! I play basketball, volleyball, and I lift weights.  Plus, I don’t have to wear a brace anymore, which is awesome.

Since I’m the new blogger, I wanted to try something different. I want you guys to ask questions. If you have any concerns, questions, or stories of your own, I want to hear about it. If you really like this idea, and there are enough questions, I will choose a few and answer them on the blog. That way, everyone will be able to see; a lot of you might have similar questions. Think of this as a sort of a “Dear Abbie” type of thing. I’ve been through a lot of different things when it comes to Scoliosis, so hopefully I can help all of you with your questions!

See you next week!

Supporting families of scoliosis patients.