Nora’s Journey with Severe Early Onset, Congenital Scoliosis

After a lot of encouragement by others, I decided to start this blog simply because there just isn’t a lot of information out there about Early Onset Congenital Scoliosis. Even some of the nationally recognized authorities and scoliosis organizations do not have current and accurate information readily available! Shocking right?  If nothing else, I hope our experiences, stories, research and information can help other families with this diagnosis.

Here’s where Nora’s Story Began – December 10, 2012

nora santa

It’s this picture, right here, where it began for me.  I will forever look at this beautiful picture with a mixture of emotions.  You’re thinking: What? This is such a great picture of an adorable baby (she is pretty darn adorable isn’t she?) meeting Santa for the first time and she’s happy!  But it was that day, just before going to see Santa that a good friend confirmed that I wasn’t crazy and being an overly worried first time mom.   I had noticed what looked like and felt like a curve in my daughter’s spine earlier that week.  She was just five and half months old.  I showed it to my husband and he thought so too but wasn’t entirely sure either so we asked our friend to take a look.  She, without hesitation, confirmed our thinking.  Of course it was a Saturday and I knew we wouldn’t get in to see her pediatrician till Monday, giving our minds plenty of time to go into overdrive with worry. 

So this picture will forever stand out to me as the beginning point of her journey down a long curvy (pun intended) road.  And this picture will also make me smile and remember this cute, funny little baby less than 15 pounds, waiting in line to see Santa and was truly admired by everyone else in line.  I mean look at her, she’s so stinkin’  adorable you just want to squeeze her!

That Monday we got her first x-ray.  The x-ray tech let me see the x-ray before we left.  What a bad idea that was.  We didn’t see a doctor after the x-ray, we didn’t get a report or diagnosis right then and there either.  No, we went home and had this image ingrained in our brains.  So what did I do at this point? Of course I cried and cried… and then I googled.  Yes I googled!  I knew I shouldn’t google medical things aimlessly without all the facts, or any facts for that matter, but I couldn’t help myself.   It wasn’t till the next  afternoon that we got the call that said, “Your baby girl has congenital scoliosis, she will have to have surgery. You need to go to Children’s hospital in Denver and see a orthopedic surgeon who specializes in congenital scoliosis.”   

nora first x ray

Stay tuned folks, as I’ll try and update this quickly and get us up to where we are at present day!  Also check out the about section above and get a little more knowledge on EOS Congenital Scoliosis


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