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Cameron visits Joss in the hospital following his scoliosis surgery
We have worked on our mountain house – and written about it – much less recently than in previous years. The simple reason is that we have been dealing with a major health situation with our youngest son Joss: scoliosis (curvature of the spine).
We would not normally include such information here, but we discovered that few resources exist for people in our situation. Our hope is that this post may help someone else who is looking for answers.
We first discovered Joss’ situation in November 2006, when he was 13-and-a-half years old. Gail was goofing off with him, and on a whim she decided to check his spine. She felt a slight curve mid-spine that had not been there a month earlier.
We were not able to get Joss into a doctor until early 2007. Joss’ pediatrician referred us to a pediatric spine specialist, who took x-rays. Joss had scoliosis with a bend of 25 degrees. Dr. Bucklin explained that the protocol above 25 degrees is a back brace. (The protocol above 50 degrees is surgery.)
In early 2007, Joss' scoliosis was 25 degrees. A year later it had grown to 65 degrees.
From his experience, Dr. Bucklin said the only brace he would recommend as effective was the Boston brace. He made it clear that the brace would not fix the scoliosis – it would only prevent the curve from getting worse. Dr. Bucklin showed an example of the brace. Gail put on a brave face, but when she got home she cried to Russell that it looked like an iron maiden.
The situation was particularly devastating to Joss. He has always been wiry, athletic and agile. He loves to run around, climb on things, and push himself physically. He would need to wear the Boston brace for 23 hours a day for the next three years (the only relief would be during meals) and do a regime of physical therapy exercises twice a day.
As a concerned parent, Gail promptly hit the Internet to research as much as she could. She discovered:
Gail looked for alternatives to both the Boston brace and the physical therapy (which consisted of very generic exercises, not specific for Joss’ situation). The most promising alternative was a combination of Schroth therapy with a Rigo-Cheneau brace. This procedure has been successful in Europe but is only now making its way to the U.S. The problem was that the only American center was across the country in Wisconsin. Gail and Joss would need to spend a month there.
After numerous exchanges, the Center recommended that we try the Boston brace first, since we had already paid for it. If that treatment proved unsuccessful, we could then investigate the alternatives.
What followed was more than a year of sheer hell for Joss and his parents. Joss’ first reaction to the Boston brace was “I’m not going to wear that.” Rather than fight him directly (one does not accomplish much by confronting Joss), we let time ease his stance. Gail promised to do his exercises with him twice a day, and we were able to get him to start wearing the brace for a couple of hours at a time.
We discovered that tag-team parenting worked best. Gail’s style of coaching would work with Joss for a few weeks, then Russell would take over with a different approach. We got Joss to wear the brace to bed (though he would usually take it off after a few hours of sleeplessness) and to school. The school made special accommodations to give him extra time between classes, as well as duplicate books so he wouldn't have to carry them to and from home. After several months, Joss was wearing the brace up to 16 hours a day. (We learned that doctors prescribe “23 hours a day” so that you’ll actually commit to about 16).
In this photo from July 2007, Joss wears his Boston brace while helping to build the mountain house
Joss complained of constant back pain. The doctors kept telling us that “scoliosis does not cause pain.” Maybe not, but the torquing of the muscles around the spine was absolutely making life miserable for Joss.
We were making terrific progress until September 2007, when Joss cracked a rib while camping. With even more pain, Joss was unable to wear his brace or do his exercises. By the time he felt better, Joss was out of all of his habits. Any attempts to resume his scoliosis protocol resulted in major conflict.
The situation took its toll not only on our relationship with Joss, but on our relationship with each other. Gail and Russell didn’t resort to any blaming or resentment toward each other, but the constant stress, lack of quality time and mounting frustration created a very unhappy household. We enrolled Joss in counseling to make sure that he always had someone he could talk to. There were times when Joss’ brother Cameron was the only one who could put Joss into a good mood.
In November 2007, Gail and Joss returned to Dr. Bucklin for a progress appointment. A new set of x-rays showed that Joss’ curve was now 48 degrees. The good news was that Joss no longer needed to wear the brace – it wasn’t doing any good. The bad news was that Joss would require spinal surgery.
The surgeon, Dr. Lincoln, was an hour’s drive away in Oakland, but he is considered one of the best pediatric spinal surgeons in the state. (He is also a distant relative of Gail’s – they’re both related to Abe.) Friendly and experienced, Dr. Lincoln shared all of the possible worst-case scenarios for the six-hour surgery, including death, paralysis and blindness (from being face-down for six hours).
By this point, Joss’ spine curve had reached 65 degrees. Dr. Lincoln said it was “particularly aggressive.” Surgery was scheduled for April 23.
All four of us went to Oakland on April 22. Joss had one last meltdown that evening, but was relaxed and calm by the morning of the surgery. The operation was completed two hours early; Dr. Lincoln said Joss’ spine was still very flexible and he was an easy patient. Joss spent the night in intensive care, followed by five days in the hospital.
Joss has two permanent metal rods inserted on either side of his spine, with a set of screws securing the rods to vertebrae T3 through L1. Because his neck and waist were not affected, he should have minimal long-term limitations on his mobility. His ultimate height should also be minimally affected because most of his remaining growth will be in his legs. He has instantly gained 1-1/4 inches in height and 15 lbs. in weight (from the rods and screws). His convalescence will be three to six months, and he will be home-tutored for the remainder of his freshman year. Our hope is that things will finally start to get better for Joss after a year-and-a-half of misery.
Joss’ spine post-surgery (Note that he actually bends the other way from compensation – it’ll take about three months for his body to straighten out)
Joss has two permanent metal rods inserted on either side of his spine (the spine itself is too faint to show up in this x-ray)
All of our postings and work on the mountain house for the last year-and-a-half have been between doctor visits and helping Joss. Needless to say, our progress has been slow. Gail succeeded in getting our next inspection (originally due in June) pushed out until the end of the year.
Four years ago, our hope had been to build a vacation house that the whole family could enjoy. That is unlikely to happen at this point. Our eldest son Cameron will graduate from high school in a month and has been accepted to a four-year college. When he leaves home in the fall, we will still be working on our mountain house.
Joss’ therapy: Cameron and Joss play the “Rock Band” videogame, currently about the only exercise Joss can do
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