A big, emotional bump in the road

Well, it’s been about 3 weeks since my last post.  It seems like a lot longer than that, though.  So much has happened in the last month – so much that my emotions have been overwrought and my fingers paralyzed to put them onto the page.  This morning I felt ready, though – because how can I just share the positive, hopeful moments on our journey?  I have to share all of it.  If I share only helpful hints and the positive, that may lead people to falsely believe that the road on the journey through Scoliosis is pretty smooth, not riddled with jolting bumps as most of ours is.  A long time ago, I said that I felt that God was putting us on this journey for a reason and that we were probably meant to travel every avenue of this disease – first, my girl was diagnosed young, she tried one brace, then her curve progressed to a very severe level (69 degrees), then we tried another brace, then my son was diagnosed young, then he went into a brace…we’ve traveled pretty far, to say the least.  But, now we are faced with the one thing we always hoped to avoid: surgery.  Now, there are many people out there who have had spinal surgery, many who are doing really great, many who may say it’s “really not a big deal.”  But, it’s a big deal to us.  A grueling 12+ hour surgery, weeks of painful recovery, and then my daughter’s precious, innocent body being altered in a way that will affect her forever – yes, to us it’s a big deal.

But, let me back up, because just 6 weeks ago I had the great news that my son’s Scoliosis is all but gone (for now, yes, that is still true), and that my daughter was holding and “the same”.   I could tell from the first day sitting down with Luke (our Orthotist) on our visit last month that he noticed right off the bat that something was not “the same”.  He looked at her current x-ray, he looked at my daughter, and he said, “Have you given thought to your game plan AFTER bracing – to what your criteria is to stay with this or progress to the next level?”  Well, I was thinking – we will stay the same!  We will keep wearing these wonderful braces and doing therapy and fight this thing! (Insert Warrior Mom fist pump here).  He just smiled, said “ok”, got to work making their braces and, just as we were prepared to leave on our second-to-last-day, he called me in to his office without my kids.  He showed me the x-ray on the computer, and showed me the one from the year before and it was obvious to me then what was obvious to him at the start of our visit – things are definitely NOT the same.  I have inserted a sketch below so you can see the difference in the curve between this year and the previous year.   The cervical region had a new, more pronounced curve, the thoracic curve is more pronounced and the lumbar curve is larger.  Luke put the x-ray through his software and was getting Cobb Angle calculations closer to 69 degrees (our Doctor had estimated 58)!  Right back to where we started!  Luke explained the danger of waiting too long – that if the lumbar curve gets too great, it, too, will need to be fused and the entire spine will lose mobility (instead of just a portion of it being fused).  So, why did our top-notch Orthopedist tell us she was “the same”?  Well, my theory is that – according to the Doc – my daughter’s curve was always going to be surgical.  Whether it was 55 degrees or 69 degrees – it was going to need intervention at some point.  We were not convinced when we first started seeing her, but are starting to accept this new reality now.  The other reason is that, depending on what method is used to measure Cobb Angle, there are vast differences in what measurement can result (maybe I’ll write more on this later – it’s interesting)  But, the fact remains that now surgery is our reality: It’s not a matter of “If” but a matter of “when”.   Well, I was already tired and emotional after 10 days on the road with my kids (solo), thousands of miles of driving, and the prospect of a 12 hour drive to get us home the next day.  So, Luke had to tolerate a bit of my weeping.  He was gracious, as always, and prayed with me so I could pull it together and get back to my kids without upsetting them, too.

Curve Comparison
Curve Comparison

When I got back home, I met with my friend and trusted Doctor, Dr. Morningstar.  I knew that if anyone would contradict my daughter’s need for future surgery, that he would.  We looked at my daughter’s x-rays and he pointed out that the curves could be increasing on paper (in the 2-D world) because of actual 3-D rotation.  This is always something to keep in mind (rotation is such an important measurement).  I HAD been noticing that my daughter’s posture was slipping.  One cause, we think, may have been that she had grown enough that her brace was not fitting her well – that she was rotating in her brace to compensate for her discomfort in her ill-fitting brace.  We should have recognized this and gone back to Luke sooner for a new brace.  (Something to keep a close eye on now).  Dr. Morningstar also pointed out that studies show that surgeons can get the same amount of correction on a spine that is at 70 degrees or 90 degrees (corrected back to about 40 degrees).  So, I shouldn’t panic.  We do have time.  One of the reasons our Orthopedic Surgeon was not talking about doing surgery now is probably because she also said my daughter is “nowhere close” to being done growing.  Dr. Morningstar pointed out how it’s preferable for the hip bones (and other bones) to be close to being done developing in order to compensate the bone grafts that need to be taken from the hip and put in between the spinal column to fuse it.  But, even Dr. Morningstar was realistic – he said that we can increase her therapy, get more aggressive, but that we still may only be able to hope that we can hold this curve off until she is close to being done growing (maybe 3 more years).   So, we have a new goal: keep bracing diligently, increase the intensity of our therapy with Dr. Morningstar, and try to hold this curve off until her body is strong, developed, and ready for the best chance at surgical recovery.

Needless to say, this has been very emotionally difficult – for all of us.  Our daughter has had to accept the fact that she will be spending most of her adolescence in a brace, a lot of her time in therapy, just to probably need to endure a difficult surgery anyway.  Her response when we sat down and told her: “Well, life’s not fair.”  She’s right.  For myself, I’ve had to put aside some of my own hobbies and aspirations, in order to prioritize being there for my daughter and cheerleading her and coaching her through more and more therapy.  I will have to mentally prepare (IV IN THE PROZAC!) for nursing her after surgery in the future, and – of all things – finding a new surgeon.  Because, one week after we got back, we found out that our top-notch, best-in-the-state surgeon was leaving the state to further her career elsewhere.  So, it’s back to square one on that front right when we need it the most.  *sigh*.  So, this post is long, but the month has felt longer, believe me.  I’m trying to get jolly for the holidays, count my millions of blessings, and get re-charged and re-inspired for this new chapter, but I have to let the grief pass and pray for the Lord’s strengthening on my life and I know, with his help, I’ll be ready to soldier on.  In the meantime, I will continue to take the steps required.  We start tonight with our appointment with Dr. Morningstar.  Wish us luck!

On the road again!

I sit here this morning, with a hot cup of green tea by my computer, sitting at my Aunt’s house, nestled in the blue ridge mountains of Virginia. Yes, life seems pretty good today. It is, however, also the 4th place we have spent the night in the past week. Today we head out to our 5th location – my Aunt and Uncle who are located near Orthotic Solutions. Yes, it’s that time of year again – the time to journey to Luke Stikeleather and put the next year (ish) of their Scoliosis maintenance in his capable hands. I often talk to other Moms about the lengths we will go to for our children – and, this time I’ll be driving – alone – over 2000 miles before the trip is over. I’d say those are great lengths. And, I would have gone further if need be.

It all started when an attempted visit to my 89-year-old Grandma in Southern Indiana last July went awry because she became very ill. My brother (who flew in from Seattle) and I decided to make the first weekend of Nov. a target date to re-attempt a reunion at Grandma’s. I figured I could take the kids out of school 1 or 2 days, drive the 10 hours, spend a couple days, and drive home. It was a good plan. Then, I started to notice how much my kids have grown and I knew that I would be needing to make another long trip, sooner rather than later – a trip to Luke in Virginia to get new braces made for the kids. So, instead of driving 10 hours to Indiana, and 10 hours home, and having to head out on another 12 hour trip to get their braces made (and back), I figured I would do a great, big loop and do it all in one trip (saving me approximately one 10 hour leg of driving). So, we left Nov 1st, spent the night at a cousin’s house near Indianapolis, made it to Southern Indiana for a couple nights (where we saw many, many family members), headed east a couple hours to another cousin’s house, then East about 8 hours to my current location. Today we head a measly 4 hour drive to where we will stay until our shiny new braces are made and we are headed on our final 12 hour drive home. My daughter makes an excellent navigator (she says she rivals the GPS, and I think she’s right!). My son sits in the back and plays LEGO and we all are listening to a recording of “The Hunger Games” trilogy, which is pretty riveting. We stop after every disk to do 15 minutes of homework and so I can listen to some “tunes” to perk up. My kids are excellent travel companions, but we miss my husband, who stayed home to work, coach basketball, and keep my business running in my stead. So, for those of you thinking that it might not be “worth it” to travel far for your children’s Scoliosis health, remember that the journey takes effort, but it can be very rewarding. I will try to check in while we are at Luke’s and talk more about that process (I haven’t written about it for a while). Safe travels, everyone!