Fix Olivia’s curvy spine

I'm going to title this, "When bad teen posture isn't just bad teen posture."

 

To make a long story short, Olivia was diagnosed with juvenile ideopathic scoliosis in May. I had noticed her right shoulder falling forward but thought it was just slumpy teen posture. When she raised her shirt up one night to brag about her abs and I saw her rib cages were uneven, I knew I wasn't looking at just bad posture.

 

She was quickly diagnosed at that point. My reptile loving girl ironically has a backbone shaped like a snake. Her main top curve measures 30 degrees and her main bottom curve measures 34 degrees. To put in perspective, under 10 degrees is not considered scoliosis. Over 45 degrees is in surgical range for a full spinal fusion. The other important piece of information in the diagnosis is how much longer a kid is expected to grow. Doctors measure this by looking at the calcification along the pelvis. Olivia has been scored as a high Risser 2 or a low Risser 3. Risser 5 means you've hit the end of growing and are in your adult bones. This is important because scoliosis can only be corrected while a person is still growing. Once you hit Risser 5, very little correction can be made. The doctor was surprised that, at her age of 15, she is not a Risser 4+. I mean, she DID just lose her last baby tooth lol. I guess she's slow-to-age which is coming in as the silver lining in this diagnosis. The not-so-silver-lining in her Risser score is that she has an 88% chance of her curves getting worse through the rest of her growing years. Scoliosis can rapidly progress if you are not vigilant and in the care of a great doctor.

 

Scoliosis treatment has advanced very little in the past 50 years. Pediatric orthopedists usually handle scoliosis cases and they either attempt to hold curves in place using a brace until a child is done growing or they suggest doing full spinal fusions. They rarely try to fix the curvatures. There are only a handful of clinics in the world that are making strides in correcting scoliosis. To that end, after finding no one worth entrusting Olivia's care to in town, we will be traveling out of state to the Scoliosis Care Centers on July 18. They are changing kids' lives through innovative treatment and we are positive they are Olivia's best shot at straightening her spine. The best case scenario is that they are successful. The worst case scenario is that they fail but we know we did everything we could and have no regrets. Having no regrets is important to us.

 

Because the clinic is for kids and teens and people travel from all over the world to attend, they run it bootcamp style. Our first visit will be three weeks long and Olivia will spend 8am-5pm every day being measured for her brace and therapy equipment which is built from the ground up specifically for her. She will spend time working with therapists learning the physical therapy she will have to do every day when she comes home. After this initial 3 week visit, we will travel back to the clinic every three months for a week to have the brace and equipment adjusted and to check her progress. The doctors say, because of her age, the first year will be focused on correcting the curvature. The second year will be focused on holding the correction. The third year she will be weaned out of the program. This time frame is, of course, dependent on when she finally hits Risser 5. The costs will be:

 

Clinic fees: $14,775 for the initial 3 week visit

Custom brace: $6500 each or $13,000 if separate night brace is needed

Traction chair: $7900

Spinal weights: $1350

Additional quarterly week visits: $3900

Housing, gas, food: $$$

 

Blink. Yes. That's almost $40,000 for the first 3 weeks and we will probably hit $80,000 by the time she's weaned out of the program. We’ve been told to expect our insurance to pay none of it (the clinic does not deal with insurance so we must self-file) and if we see some of it paid, that is a blessing. Southwest also has a catastrophic fund for employees that we’ve been told is very generous. One of the conditions of applying for this financial help is to show you've done all you can to be responsible with your money and are still coming up short. To that end, we will be doing some fundraising through the fall and have set up this gofundme as well. Any help you can give us would be greatly appreciated.

 

Are there cheaper routes to go, routes that might include insurance paying out? Sort of. The orthopedists we've consulted have told us to go "live her best life" until she needs fused from neck to tail as an adult. This is dismissive and unacceptable. Given her age and Risser score, we have ONE shot to get this right for her and it's become clear that mainstream medical isn't capable of getting the job done. We are within driving distance of one of the best scoliosis clinics in the world and we’d be foolish not to go for it. We also remind ourselves that finding the money will be the ‘easy’ part even if it means paying it off for the rest of our lives. Olivia will shoulder the hard part -- wearing a brace 22 hours a day along with several hours of painful daily therapy will be much harder than figuring out the finances. I've been told by other parents that the process is a whole family effort. She has to have help being put into her therapy equipment and sacrifices will have to be made -- things like, no summer days at the water park or beach vacations. This will be a hard journey, but we have to look at the future payoff, not today's inconveniences. Sometimes you have to do hard things.

 

Scoliosis is a lifelong disorder that has to be monitored. The interesting thing about the progression of scoliosis is the 30 degree break point. It is well documented that if a child enters adulthood with a curve above 30 degrees, that curve will increase at a rate of 1 degree every year. This means you hit the 45 degree surgical range within 15 years. If you enter adulthood under a 30 degree curve, the curve only increases 3 degrees every 15 years meaning it would take a lifetime to hit the surgical threshold. This is just a matter of physics and gravity. The further bent you are, the faster you bend further from gravity alone. Our goal is to get her curves as far under 30 as possible and the doctor is confident he can get her at least into the high teens-low 20s. It would literally change the trajectory of her future health.

 

Praying friends, we need your petitions. It will be a hard and painful trial for her. We need you for that more than anything. First, pray for flexibility and her spine to respond to the treatment. Second, pray for her to have the mental fortitude to embrace this with confidence. The brace she will need to wear can not be hidden and it will take confidence to pull off. Third, please pray for us as we parent her through this.

 

PS. How could we not have SEEN this??! It’s actually quite commonly missed and in Olivia’s case, because her 2 main curves are similar, it has a visually straightening effect. Scoliosis isn’t just curvature though. It’s called a 3-D disease because the vertebrae also twist. It’s this twisting in her upper spine that is causing her shoulder to fall forward as her rib cage rotates. Without the twisting vertebrae, we would not have caught it until it was too late to do anything. It's also the twisting that is the most sinister aspect of scoliosis because it can eventually compromise your lungs and heart function. We feel confident that the Scoliosis Care Centers can keep this from ever being a concern for her.