Imagine there are two different families, one family is told their 10 month old baby has a 35 degree idiopathic curve, an early onset progressive scoliosis diagnosis and then the other family is told their 10 month old baby also has a 35 degree congenital scoliosis curve from an abnormally shaped vertebrae.  I often see parents early on thinking, “ok sure they are different but they can’t be that different a curve is a curve and the treatments must be similar.”  This sentiment couldn’t be further from the truth really. Let’s talk about the differences   Early Onset Progressiv ..read more

I want anyone following my blog or anyone who comes here for information to know, I do not have any control over the advertisements that show up on my site or at the bottom of my blog posts.  None.  That also means I do not endorse or support the advertisements you see either. Currently there is an advertisement from a law firm offering free legal consultations for a class action lawsuit against Nuvasive the manufacturer of the MAGEC rods.  This ad is popping up all over social medias well.  Just to be clear, I do not support this advertisement or even agree with the merits ..read more

My second child Rose is just 14 months old. Technically she’s a toddler but really she’s still a baby. I mean she only just started walking a few weeks ago. She’s an adorable, funny, healthy and happy baby…. A baby! Rose at 14 months old She’s the same age right now as Nora was when Nora got her first Mehta cast. This is mind-boggling to me.  I’ve been fixated on this for a couple weeks now. Lately I look at Rose and I think, my gosh how did we do casting with Nora? Look how little Rose is, she’s not even 20 pounds.  How did we do this years ago? I’ve REALLY realized just how ..read more

Let’s be real, of course there isn’t a single one of us who has dealt with an early onset scoliosis diagnosis and has said ‘well I’m glad we got this diagnosis’. No, not at all.   It’s physically, emotionally and can even be financially challenging.  It’s scary and hard and that’s just touching the surface. The unknowns, the casting, the OR visits, the anesthesia, the surgeries, the stress around living with a child in a cast, the waiting, knowing that for many this can really be life threatening, . … it IS too much and you can’t understand what it is like unless you’ve been thr ..read more

Today is Rare Disease Day. Chances are you didn’t even know this day existed. The main purpose of this day is to raise awareness in the general public and decision-makers about rare diseases and their impact on patient’s lives. So today I’m writing to bring attention to the rare forms of Early Onset Scoliosis and Thoracic Insufficiency Syndrome (TIS).  These complex forms can be hard to understand how difficult they can be and what kind of impact they can have on a child and a family, so imagine with me if you will… – imagine your child having to wear a tight, hard plastic back brace ..read more

It’s been a year since Nora’s spine surgery.  Time has flown by and she really is doing wonderfully.  Sometimes it’s easy to forget just all she went through for over half her life, she’s an active, funny and kind little four year old now.  Now the only daily reminder comes when she asks you to scratch her back, her hardware is still visible and easy to touch under her soft precious skin.   Other than that you really would have no idea. Lately there have been a lot of families asking for tips and experiences around planning for their child’s spinal surgery.  There ..read more

A few weeks ago I got to witness a sweet little two year old girl receive her fourth Mehta/EDF cast. I had the privilege of meeting this baby and her parents last summer when they were just starting the casting process and, like many parents, they were very overwhelmed and scared. We just so happen to have the same amazing surgeon, Dr. Sumeet Garg at Children’s Hospital of Colorado. If you know me from all the early onset scoliosis support groups, you know I’ve tried to educate myself as much as I can on all things EOS, whether it’s idiopathic, congenital, even some on neuromuscular and syndro ..read more

We are more than two months post-op and coming up on almost three years since diagnosis and treatments. Naturally, throughout much of this journey, I have had time to reflect on specific experiences. Over the last three years I’ve also gained a great deal of knowledge. Of course, like many difficult roads traveled, there are moments where you think, “I would have done that differently”. Thankfully, at least so far, my list isn’t that long but I do think others can learn from my reflections. Here’s my list of what I would have done differently knowing what I know now: 1. Comparing. I wish the l ..read more

Tuesday, August 25th, 2015 5:30am We arrived at the hospital for check-in. We have been to this hospital for pre-op check in numerous times by now over the last couple of years so it all felt very familiar and …comfortable. We weren’t walking into all of this as newbies. That really helped. It helped with my emotions, fears, and expectations as well as Matt’s and even Nora’s. Nora knew we were here because her doctor was going to ‘fix her back’. She knew we weren’t getting a cast but she didn’t fully know what all was going on either. She was comfortable and even relaxed during all the pre-op ..read more

After sharing with you all the surgical options we were faced with, it was great hearing from so so many of you.  I was surprised just how many people reached out to personally thank me for sharing the details in an easy to understand way.  Many folks were curious what we decided and so many shared their experiences with some of our options.  It’s true, there is no right answer, only time will tell, and every case and every spine is different.  But thankfully I can say, making this choice was relatively easy for Matt and me. Here’s what we decided (if you can’t wait and don ..read more