This afternoon the big trucks were out on the country roads near my house as I made my way home from running errands. They were in the process of doing some much-needed cleanup on our drainage ditches. I ran home, unloaded the groceries, packed my lunch, and headed out to get “V” from school. He had already eaten lunch, so I told him I had a very special thing to show him. He immediately was intrigued. We are not used to having ANY action near our small town, so he thought it was nearly impossible that something REALLY COOL lurked just around the corner. But, when we headed to the end of my road, about 1/2 mile past our house, he saw it – the big, yellow, magestic creature, ripping out entire trees with it’s immense claw!! I was in a bit of awe, myself, I must say. The man holding the “stop” and “slow” sign waved me past (we don’t get many cars on my road – maybe 5 or 10 an hour, so he was paying close attention to me). I just waved back, pulled the minivan over on the shoulder on the opposite side of the road, rolled the windows down, turned the hazzards on, and we sat there, gaping like it was a live-action movie! “V” was thrilled that he got to climb into the front seat, and he stuck his head out the window (I mentioned there are very few cars that pass – don’t worry – I was watching out!!) He just exclaimed “Wow, I can SEE it and I can HEAR it!” After some time, the truck we were watching went to take a break, so we headed down the block to the other truck, excavating dirt from some ditches. This road is a bit busier, but we pulled up, right across the street from it this time, and my son climbed on my lap and stuck his head out the window to watch. The man in the truck, wondering what was going on, saw the wonderment beneath my son’s spiderman sunglasses, and he grinned as realization dawned on him. This was an action movie, and he was the star! He got a bit akward as we gaped at him and his big truck, but he put on a good show anyway! It was great fun, out there in the beautiful spring weather, enjoying the view of trucks working next to the wide open fields of freshly planted crops. Sometimes I don’t like living out here, but sometimes I just LOVE IT! Take some time to share the wonderment of a child today – it puts you in a terrific mood!
The reminders today have come from both ends of the spectrum. A friend mentioned that he had to sit and wait while his co-workers were picked off slowly, one by one – laid off from their jobs as he waited to be let go of his. Every day it seems we are reminded of the dismal turn of the economy – here in Michigan people are losing jobs left and right – it’s like Survivor Michigan. And, then there are the reminders of all the people who are in need of solutions for their problems that are hard to find – my reminder of this today was when I was studying a new scoliosis bracing system and how I can modify it for my daughter and other smaller people. I was also trying to come up with solutions for how to make people of other ages, shapes, and sizes fit comfortably – so they could actually be rid of back pain without additional discomfort elsewhere on their bodies. It’s just another dismal reminder of what a plight this life can be!
But, I also had great hope today. Sitting in a room full of loved ones, watching my father Wii box with my son – that was fun, that was joy, that was hope. Watching my son’s T-ball team, as they scattered and dove around the field every time they heard the ball crack, oftentimes piling on one another as if it were a tackle football game – that was fun, that was joy, that was hope. Celebrating another year that my brother has been on this earth, alive and well – that was joy!! Fitting my child into a garment that we’ve tried and changed numerous times and having her look down and say, “That actually feels pretty good.” That is joy, and definitely hope. So, today was a constant reminder of what an act of will it takes to find the joy, cling to it, and wait out the dismal until tomorrow. I feel blessed today. I feel frightened, too, but mostly blessed. I’ll focus on the blessed.
We went this morning to the pediatric orthopedic surgeon for my daughter’s checkup and my son’s first visit. He has a mild case (which we knew), and “C” is holding at a 55degree curve. It’s a scary level, but they are still not recommending surgery, so we hold onto hope.
“V”: The first thing she said was bile to our ears – “Let’s wait and see 6 months.” As I’ve outlined before, we were given this advice once and it was the worst advice we ever took, and we were not taking it this time. My husband was able to immediately vocalize what my nerves were slowing my brain down too much to process- that the wait and see game wasn’t going to work for us. Our chiropractor, who uses a cutting edge type of therapy to combat curves (I’ll post more about that later) called the Pettibon technique, said we needed a clear MRI for “V” before he’d start his therapy. He didn’t want to “monkey” around with him until we knew there were no cysts or tumors. Well, our surgeon was determined to wait a while on the MRI, and she is pretty certain there is not a cyst because there wasn’t on his older sister, but I like proof, thank you very much. So, June 5th, he and I head down to Mott Children’s hospital in Ann Arbor for his knock-out MRI (bring on the laughing gas!), to see where we stand. We have our fists up to fight this curve as soon as we can. We are no longer settled to wait for traditional, mainstream cures. Our orthopedic surgeon is great, and she understoond our apprehension, and was in agreement.
“C” is holding, but that’s still heavy on my nerves. I am working with her orthotist to get her into a new comfort shorts system for the Spinecor brace. The shorts system looks more comfortable than the straps and snaps than anchor her current brace, but the problem is that they don’t make it small enough. So, this week I’ll be pulling out the measuring tape and shears, and doing what I do best – coming up with a solution (God willing). I believe that just because a solution doesn’t exist yet, doesn’t mean there isn’t a good one waiting just around the bend, with a little creativity and determination – two things a desperate mother has when necessary!
Now off to my much-needed massage at the chiropractor (those hours hunched over a sewing machine produce some nice knots!) 🙂 Meanwhile, my kids will go for a nice swim at Grandma’s neighborhood clubhouse and we’ll have a nice pre-mother’s day celebration with her tonight before heading home. Having my in-laws closer to all our doctors makes the visits a bit easier, that is for sure.
Happy Mother’s Day, everyone!!!
For those of you who do not (yet) know my family, I thought I would introduce the cast of characters.
First, there’s me: Tina. I am the one in the family without scoliosis, but I do have my spinal challeges anyway (playing the violin since the age of 4 has put a kink in things – literally, if you look at my neck on x-ray!) Scoliosis runs in my family (my mother had it), but I, fortunately, dodged that bullet! I am the family chief organizational officer, spiritual guide (Ok, so I push everyone out the door to church, but that counts a little), and I dabble in many things – including music with my band, 1 Sam 3, sewing lots of stuff, working out, Girl Scout leader, reading…
Andy: My husband and scoliosis patient number one. His was more of a passive case – discovered late in his teen years, he refused a brace or surgery because he had his mind on only one thing – FOOTBALL! He has only a single curve, so it’s different than the kids, but he has occasional back pain and his own set of challenges. He keeps in great shape, and keeps the spare tire pretty flat, which he swears is key to keeping the back pain low. Andy is a WONDERFUL dad, a GREAT husband, a TERRIFIC high school math and computers teacher, and a charismatic (albeit underappreciated) high school football coach.
“C”: My first serious challenge! And, she has scoliosis (not the first of the ways she challenged me). As layed out in a previous post, we discovered her curve as she exited the tub one night. She’s teetering just below a 50 degree curve on both parts of the S, and is in a Spinecor for a bit more than a year now. “C” is a speed-reading, 7-year-old second grader, who loves to reach the top of the rope in her gymnastics class and to belt out Christian praise songs at the top of her lungs. She also one of the most enthusiastic members of Brownie Troop 120 and is a pretty decent dancer! (No formal training, though)
“V”: A challenge in many ways, he is our newly diagnosed member of the family – with 15 and 18 degree curves in his S, he is one of those very rare young boys diagnosed with it. He’s a 5-year-old preschooler, who obsesses over trains and transformers and can spend hours building things (namely, more transformers) with his LEGO blocks. He also enjoys gymnastics and ,now, T-ball.
After I had my daughter nestled comfortably in her Spinecor brace, I continued to spend time on the message boards only to find that a lot of moms needed solutions for their children and how they could maneuver in the brace and use the facilities while in their brace. Each doctor appointment we went to resulted in the same comment – every single person would comment on how they liked the bodysuit and how it could be used to help, not only other children, but patients of all ages who had a hard time maneuvering in their braces. Was this bigger than just a Mom with a sewing machine and a desperate need to make her child comfortable? Could this be an answer to what other moms and patients have been needing? To find out, I decided to begin pursuing this option on a grander scale. I filed a provisional patent with the United States Patent and Trademark Organization, just to protect myself, and set to work. I am currently in the process of finalizing the design and getting some feedback from other patients.
So, this is where I am in the process: I want to hear from you! I want to hear if you need this, if you like this, if you don’t, and anything else you want to share. And, I’m willing to give you a bodysuit, custom fit for you or your child, with no expenses attached, to get your valuable opinion. Please believe me when I say that I care about more than making a buck here. I care about more than profit margins and low production costs. I care about COMFORT! I care about supporting patients of scoliosis! I care because this is about me and my children as much is it is about you and yours. So, email me for more information: EmBracedInComfort@yahoo.com. So far, the feeback from patients has been very positive. So, I hope to hear from you!
Constructed of 100% cotton, stretchable, breathable fabric
Lined to simulate the comfort of traditional underwear.
Convenient pelvic strap, fully lined for comfort, and fastened with Velcro for ease of use and to allow for growth
Features optional decorative stitching
JULY 2011 UPDATE: THE FREE BODYSUIT OFFER IS NO LONGER VALID, AND THE BODYSUIT LOOKS WAY BETTER THAN THIS NOW. GO TO: www.EmBracedInComfort.com, TO SEE ALL THE GREAT PRODUCTS WE OFFER NOW.
Well, now that I’ve given a quick overview of how we started dealing with this disease, I can now elaborate a bit more on some specifics for us. After finding out that my daughter had a 25ish degree curve on both the top and the bottom of the S (thoracic and lumbar) -the exact numbers I can’t remember, nor does it matter – we went off to the first specialist we were referred to. After two MRIs, one where she was conscious (partial spine) and one where she was put under anesthesia, it was determined that she didn’t have a cyst or tumor or anything else encroaching on her spine. It was plain and simple: idopathic scoliosis. It was then that I took the worst advice I was ever given – let’s “wait and see”.
Well, we waited 6 months and then the curve doubled. She was teetering just below 45% on both the thoracic and lumbar, and we were facing the edge of the cliff as to what is acceptable in a curve before surgery is recommended. Now, I should point out that my husband and I are very opposed to surgery. Just reading what I have about it makes me very leery – I just don’t want someone slicing into my child, plain and simple. I had done a lot of research about bracing, and that option didn’t sit well with me either. What kind of quality of life would my 6-year-old have in a rigid brace, where she couldn’t bend or move fully? It was then that I read about the Spinecor – a nice, flexible bracing system, which is new, but has experienced a lot of positive results. Fortunately, the University of Michigan medical system had an orthotist who administers the Spinecor, a very rare find! So, off we went to Ann Arbor to get her fitted, with a referral from our new Pediatric Orthopedic Surgeon at U of M. Her orthotist said she was barely big enough for the brace, but we managed to get it down to size. And, then, after she was all strapped in and my husband and I were educated on how to put the contraption on, I asked what I thought was a very simple question: “How is she supposed to go to the bathroom in this on her own?”. Now, my orthotist is one of the best there is – he truly cares about patient comfort and about their quality of life. But, he looked at me and honestly said that he had no idea. The Spinecor is so new, and most of the patients were old enough to take it on and off themselves, so he had never been faced with that question. Now, the brace did come with a nice little bodysuit, but it didn’t protect her delicate legs from the leg straps, and the snaps were too difficult for her to get undone and done up herself. It also had seams that ran down the back and front, into very uncomfortable places, and she just wanted the comfort of her nice cotton undies. So, what was I to do?
I ran home and popped on the internet. It seemed that I was one of many Moms who had this dilemma – the problem was that most of them had older kids in the brace. I located one helpful mother in Spain with a 6-year-old, but she said that their solution was simply to have her child go to the school nurse every time she needed to use the facilities. Well, this wouldn’t work for us for two reasons. First, we didn’t have a nurse, and, second, my daughter was shy and this was pretty embarrassing. All my life, I have been an inventor of solutions. If something needed to be done, I always figured out a way to do it. And, this was no exception. I pulled out my sewing machine, got some comfy material, ripped apart the bodysuit we had, and started to experiment. One day later I had a workable solution. It wasn’t pretty, but it worked, and it was comfortable, and she could use the bathroom with ease. ..a big sigh of relief from my husband and I as I set to work making a few more of these. I had no idea at the time that it would become more than that. I just wanted to make my child comfortable. But, I think God motivates us in ways we don’t understand to get results that he intends and expects, and this was no exception. More on that next time…
It was just over a year ago when I first looked at my dripping wet 6-year-old daughter when she got out of the tub and noticed something was not quite right. Her rib cage looked shifted to the left. Strange, I thought. I showed my husband and he didn’t think much of it, but we both thought we better take a trip to the doctor.
I don’t know if my denial gene was in full force, but I never thought of scoliosis. Wasn’t that for older kids, anyway? I knew my husband has it, but only since his teenage years. But, sure enough, when she bent over and touched her toes in the doctor’s office that day, I saw it plain and clear – and it was completely obvious. Had I just not been paying attention? If she wasn’t so skinny and her ribs weren’s so visible, would I not have noticed? For how long? Questions streamed through my mind, but I knew one thing for sure: this would start an adventure for our family that would last for many years.
I am a woman of faith, as you will see throughout my telling of our adventures, and I knew three things for sure: 1. God would give me (and us) the strength to do what was necessary 2. God has a plan for us, and 3. This wasn’t going to be easy, but, in the end we would be OK. Not perfect, but OK. If you are struggling with similar issues in your family, please join us on our adventure. Share in our stories, share in our heartache, share in our triumphs, but mostly, I hope you can share in our hope. And, for family members and friends who just want an update on our lives, well, you can come for that, too. Blessings to you all, and please come back for more as I learn how to use this amazing communication tool! And, post back telling me your stories as well.