This month, we are looking back on my post from October 14, 2009 titled “Our new adventure with the Cheneau brace.” This recounts the time of our FIRST visit with Luke, founder of National Scoliosis Center, before National Scoliosis Center existed. He was still working at Orthotic Solutions when we first visited. Working with Luke is still one of the best decisions we made in our Scoliosis journey. Enjoy….
Hello everyone. It’s been a while since I posted, but we’ve been exceptionally busy. Not only am I working hard to get bodysuits out to the patients who have been contacting me, but I’m also in the midst of getting my daughter ready to be in a wedding (I am making the dress, of course), and my daughter and I are rehearsing for an upcoming community theater production of Miracle on 34th Street. But, then we found out that we needed to take a week out of our lives to drive 600 miles to the Washington, DC area to get “C” a more aggressive brace. Whew!
So, we made the trip to Orthotic Solutions in Fairfax, VA last week to get “C” a Cheneau brace (aka Riggo-Cheneau). It was a heck of a drive to do alone, but my husband couldn’t help out due to being a teacher and a football coach (busy time of year!). So, “C” and I headed out on Saturday the 3rd – drove straight to Sterling, VA, where we were welcomed warmly into my Aunt and Uncle’s home, where we would be staying for the week. Sunday, my family took us into Washington DC, where we saw the Natural History museum, the White House, the Capital Building, the Washington Monument, and all sorts of wonderful sights. Then we met my cousin and his wife for some dinner and catching up. It was great to see family again and “C” was excited about her “girls week”.
The next morning we headed into Fairfax for our first appointment at Orthotic Solutions. From the minute we walked in the doors, I was sure that this office was there to serve others and to help people. The atmosphere was warm, the receptionist was kind and helpful, and then we met Luke Stikeleather, the Orthotist who specializes in the Cheneau bracing system. I cannot say enough about this man! He was warm, kind, supportive, and he works tirelessly to help scoliosis patients. We spent many hours with him and he went above and beyond over and over again to ensure we had the best possible experience and the best chance at success in fighting this disease. He saw from my blog that we are a family of faith, and he shared that he was a man of faith as well, and when he revealed that, it was clear that this was not just a job or a career for him, but a mission – a calling. So, we had that in common! We also discussed the fact that all we need to do now is duplicate him so more patients can be served at more places throughout the country!
“C” ended up needing to get two braces – one for the day and one for the night. It was the only way we could really fight hard against such an aggressive curve. This is definitely not a normal occurance, but with Luke’s recommendation, we went ahead with it. The braces were crafted with precision and care, and Luke made painstaking efforts to make them as comfortable as possible, reworking parts over and over again until they were just right. The nightime brace will push her very aggressively, and the daytime one will still rotate and push her curve, but in a manner that is doable for the daytime (she couldn’t wear the nightime one during the day or she’d have to walk around bent to one side!)
After a grueling 12 hour drive straight home on Thursday, I was welcomed home with a warm meal and a clean house, thanks to my wonderful Mother – in – law. She stayed through the week to care for my son during a time when my husband is only home a few hours a day. She stayed an extra day and did everything she could to help my transition back home into my regular work load. God bless her for that.
“C” is settling in nicely into her brace. Meanwhile, I’m working to quickly develop some new products for rigid brace wearers – similar to the bodysuit I already make, but with some minor tweaks. She was given a tank-top shell to wear under her Cheneau brace, but she prefers the bodysuit. She also prefers dresses to pants, as pants slide off the brace at the waist and don’t fit as well. So, being cold weather is upon us, I’ll be developing a bodysuit which extends all the way down the leg (as with leggings), so she can wear just her bodysuit, brace, and a cute dress. That will keep her life comfortable and simple with the new brace. She’s working her way up to full time over the next week, and is up to 5 hours a day, plus the nightime. She’s doing great – she’s so brave and patient, and positive about it. There are many things about it she likes better than the Spinecor, but some she doesn’t like as much. So, as with all things, it has its pros and cons. But, overall, I am hopeful that we’ll be able to stop the progression of this curve, and maybe see some improvement, over the next few months. And, I find comfort in knowing that from friends, to family, to medical professionals, that we have a great support network in place to deal with whatever is to come.