Supporting families of scoliosis patients.
Come visit my new website for online ordering of the EmBraced In Comfort bodysuit! We’re still in our infant stages, but growing every day! Be patient as changes and improvements will be made on an ongoing basis. If you have suggestions for products that would make your life in a Scoliosis Brace (or other type of brace) more comfortable, email me! We want to make patients in braces more comfortable, one garment at a time!
Yeah!!
One big thing I worry about having a girl is a fear that she will not grow up with enough self esteem. Sadly to say, I didn’t have enough growing up, and, although time and the Good Lord have helped me overcome that, I really hope to prevent that for my daughter. Then, top it off with the fact that she’ll be facing life with a potentially deforming disease, complete with having to wear a pretty noticable apparatus all the time, and my fears are compounded ten-fold. I know this is a big problem for many girls who face their pre-teen years in scoliosis braces. But, what is a Mother to do? Besides lending support, praying, and putting her in touch with other kids who are dealing with the same issues so she can build a support network, there is really nothing that will change the fundamental problem.
But, life with my children is full of surprises. Over the past few weeks, I’ve seen my daughter do amazing things. She’s not only adapted really well to wearing her brace both day and night, but she’s excelled in many areas. One is in her self esteem. Who would have thought? From the minute she asked the other girl scouts to “punch her in the back” so she could giggle when the tough plastic hurt their hand, to telling everyone about her brace (even those who didn’t ask), she’s shown no qualms about it. I think I have the fact that she’s still pretty young on my side, on top of the fact that in her school kids aren’t all that bad when it comes to teasing one another. However, I’ve been impressed by her. The other day at rehearsal for an upcoming play that she and I are in, I looked over and noticed her having a long conversation with a fourth grade boy. When I came over, I found out that she was spending time chatting with him, telling him all about her brace. Of course, I cracked up when he looked at me and said, “I didn’t think people could HAVE hard, plastic parts of their body!” It seems she took for granted the fact that he would KNOW that this was a removable component, and not something built onto her! I guess it could be worse! 🙂 But, the fact that she shows not qualms about talking about her scoliosis just shows me that, for now, her self esteem is doing just fine. She’s just happy to wear her brace under the many, many beautiful dresses that her Grandma bought her when we came back from DC. And, just last weekend, she shone as flower girl in a friend’s wedding – something she’d always wanted to do. And, for that, she got to stay out of her brace for the entire afternoon! Now THAT was a treat!
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.
I just wanted to take a minute from my droopy eyed frenzy of a life to update on what’s going on. My daughter and I make our voyage to Orthotic Solutions in Fairfax, VA this weekend – we will have three days of fittings, but we’ll also have fun exploring the area, visiting relatives, and seeing our Nation’s capital! We’ll come home with a shiny new brace and, I’m sure, an even shinier set of new problems to work through, but we’ll do so one at a time, and with God’s help.
I’m also happy that I’ve been getting so much positive feedback on the EmBraced In Comfort bodysuit! Patients’ lives are getting easier and I couldn’t be happier! I should have my sparkly new website up before I head to DC, so keep an eye out. I will be offering the bodysuit for very competitive rates and with a money-back guarantee. I hope all patients wearing scoliosis braces can give it a try and you can look forward to new products that will emerge from “C” moving into the Cheneau brace. If you wear an orthotic brace of any type and think there is a garment that might make your life easier and more comfortable in your brace, drop me a line and we’ll see what we can make for you. I’m here to help in any way I can, but I won’t be “here” for a week or so as my daughter and I forage out for her new brace. Talk to you on the flip side…
