This post is a little out of the ordinary for my blog. It’s not about pretty dresses or where the best sales are. Although, I love talking about all of those things! I was supposed to write about pajamas this week. I’m shrugging my shoulders as I type that. Next week, guys.
As some of you know, last year I had major spine surgery for severe scoliosis (83 degree S curve among other issues). I suffered a variety of complications and it’s been one heck of a year to say the least. My spine is now fused fourteen levels with twenty five screws and two metals rods that go basically the entire length of my spine. In the midst of all of that, my daughter Emma, who was seven at the time, was diagnosed with scoliosis.
Learning about Emma was like being punched in the gut and having the wind knocked out of me. On the inside, I was in full panic mode. My heart literally hurt when I thought of how this was going to affect her life. I felt insanely guilty and cried every night while everyone else was tucked in bed asleep. I put on a happy face daily and told her we would take care of her. At this time, her doctor said although a fifteen degree curve on a seven year old is concerning, that we basically couldn’t do anything until she progressed to twenty five. This was not something I was on board with and it was a tense conversation in the room. We finally agreed on bracing her around 20 degrees when the time came. That might not seem like a big deal to someone who isn’t familiar with this disorder, but I assure you, it’s very alarming in a 8 year old whose mother just had surgery for an 83 degree curve. There is no question, she will have severe scoliosis. Scoliosis can affect your nerves causing pain in limbs or no feeling in limbs, breathing problems, deform and warp your body. Some people with severe scoliosis end up in wheel chairs because their spine has crunched down on top of itself. (Mine was headed in that direction) I am a walking, talking example of scoliosis gone wrong.
Over the last few months, we tried to go about life as normal hoping the curves would stay the same for at least a couple years. Emma played her first year of soccer and made the All Star team. She continued to do ballet and singing lessons and piano. Everything seemed great until this past Friday.
We went in for her follow up seven months later where she had new x-rays. One thing I love about our doctor’s office if that they have a new special x-ray machine that only emits a tiny percentage of radiation. Fifty of these x-rays is the equivalent of one normal x-ray. Low and behold, her x-ray on Friday showed she jumped up to 20-21 degrees in 7 months.
Our hearts sank into our chest and I immediately welled up with tears. Over the last seven months I have felt tremendous guilt over Emma being diagnosed with this. I know, I know…… I shouldn’t feel that way. It’s not my fault, right? Well I can’t help it, I do. I can’t help but feel horrible that her next 8 years of childhood will be braced for 21 hours a day. Think about it….3 hours out of a brace to eat dinner and shower. That’s it. It’s a long journey ahead for her. Kids will ridicule her at school and she will have to be strong and continue on because compliance in this brace is KEY for any chance of it working. And then…what if it doesn’t work, what then?
I have spent the last 3 days AND nights on the computer and phone trying to find the best possible plan going forward to keep her from experiencing what I did over the last 20 years and counting. I have heard so many say, “Well if she has surgery, she will not have it as serious as you, or she will bounce back quick, etc”. I don’t want her to even have to think about surgery being on the table, EVER. It makes me physically sick to my stomach to try and process that. However, I am aware it could quite possibly happen.
So where do we go from here? Well, I have a gut feeling on which brace we should choose. My husband is basically letting me call most of the shots. I don’t know if thats a good thing or a bad thing. On average, Emma will need a new brace anywhere between 9-15 months. Sometimes more, sometimes less. This special brace, I am choosing is not in network for insurance so that will be a tough pill to swallow, although I am working with the company and our Doctor to try and lower the cost or get it covered partially with insurance. I feel like it’s the best choice for her and our family. I have also looked into Schroth therapy with licensed physical therapists who deal with scoliosis patients and I will learn the techniques to help her at home every day.
I refuse to let her end up like me. Period.
If you have read through this, I truly thank you. It’s not the same happy material I usually write about, but I hope this helps you, my followers, see a raw, emotional, REAL side to my life. Don’t worry, even in this post you get a little fashion…..Neil took these pictures of Emma for Lululemon’s kid line, Ivivva a few weeks back. All of these products can be found at Ivivva.com.
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