Wednesday, July 23, 2014

And She Lives Happily Ever After

Greetings and a Reminder:

I write this blog as we go through ET Mehta Casting with our daughter Olivia. The blog is intended to inform, possibly inspire, and raise awareness of Infantile Scoliosis and its treatment/cure. Please share our story. For more information please check out 

I write this blog post on the 2 year anniversary of Miss Olivia's first cast. I can remember that day like it was happening right now. I don't need to go back and read my original post to remember every little detail of that day. 

Two years.

I can't believe two whole years have gone by! So much change has happened over those two years. Olivia is now an independent little lady about to start pre-school.  We're approaching the one year anniversary of the move to our new home. Olivia has welcomed a new cousin and is soon to welcome another cousin into her life. 

To say we have been blessed is an understatement. 

Let's back up a little in order to catch up to now. My last post was in January and I mentioned that we were heading to Children's for an x-ray. I was nervous because she hadn't been wearing her brace for a month due to her being ill and then complaining that it was bothering her because she pretty much had outgrown it. I promised a post that never came. Our appointment that day was cancelled due to weather and had to be rescheduled for the end of the month. Life got the best of me and I never updated.

We went for the appointment and I am pleased to say the x-ray looked great and Dr. G was impressed by how well she was maintaining, despite being out of the brace for almost two months at that point. The plan was for her to be in a brace for a year. She had only been in a brace for 5 months. Her x-ray looked good so Dr. G gave us the option of either fitting her with a new brace, or riding it out brace free, which we would monitor closely at home and see him again at the end of June. We took the latter. It was such a thrill to be given that option, which we of course took with extreme caution. 

Following our visit with Dr. G we had to head down to NOPCO so Olivia could see her friend Ben. She brought him a bag of M&Ms (her request), which he shared with her. If you go to the NOPCO at Boston Children's Hospital I recommend you see Ben for bracing if you can. He had such a way with Olivia. She still talks about him. We said our goodbyes, which was bittersweet. I knew how much Olivia adored Ben, but I was hoping it would be our last visit to NOPCO.

Fast forward to the end of June. I was watching Olivia's back closely for the five months following our January visit and was confident we would get a good result on her x-ray. Sure enough her x-ray came back with an under 5 degree curve! We were officially graduating to a scoliosis free life! It was the happy ending we had been eagerly waiting for! Of course I still look at her back constantly and won't skip a beat if I notice anything out of the ordinary, but to be officially done with it all is such a wonderful exhale to a breath I've been holding for 2 years. We're not scheduled to return to Children's until next June!

Now that we're in the full swing of summer I catch myself staring at my neighbors' and friends' babies. I eye their sun kissed backs to check that they're straight. I hold my neighbor's little girl who is the exact age Olivia was when her first cast was put on and I'm reminded of Olivia's inability to snuggle up to me the way this little one does because she was inhibited by a rigid cast. I can't lie and say that I don't have moments where I become sad and feel robbed of those soft cuddles. 

Those feelings are short lived because I tell myself that there are worse things that parents and children in this world go through and that this little hiccup in our life is really a grain of sand in the broad scheme of things. I am reminded of how blessed and lucky we are that we had access to casting every time I look at my daughter standing straight and tall. What could have been a painful, surgical nightmare was avoided thanks to the efforts of so many. 

I know I've said it before, but overall I am glad we went through this as a family. It made us appreciate the little things we could have so easily taken for granted. It proved how strong we are as a family. It also gave me the opportunity to spread the word about Infantile Scoliosis and help other families. I would NEVER had known this even existed had it not entered our lives! 

I can't begin to express my gratitude to everyone who has read our blog. When we began this journey it became a goal to help other families going through this, and to educate others that this exists. I can proudly say we have been successful. At our last appointment one of the first things Dr. G said to me was that people are reading the blog. Families come in and they talk about the blog. That's the beauty of this whole thing. Though we are coming to the end of our journey, there are so many other families out there whose journey is just beginning. Yes, that first diagnosis is a terrifying thing. I've written this blog to show that it's doable, that there's a light at the end of the tunnel, and that you're not alone. I also wrote it so Olivia knows her history, her story. 

Everyone's experiences are different. Everyone's story is different. Everyone's happy ending from scoliosis comes at different times. We were VERY lucky. Olivia is a fast grower, which was in her favor. A minimum year of casts turned into 10 months. A minimum year of bracing turned into 5 months. That is not the norm. Regardless, no matter how long your journey is you will get there. 

Though I won't be posting very often I'm not disappearing off the grid. I will continue to pop in now and then so you can hear about our adventures as a cast free family. I am ALWAYS accessible via Facebook if you have any questions or just need to hear a reassuring word or two. I won't be a stranger, so don't you be one either. 

Thank you. 

There's a light at the end of the tunnel. You are not alone.