We’re Back!

Greetings and a Reminder:

I began writing this blog as we went through ET Mehta Casting with our daughter Olivia. The blog was initially intended to inform, possibly inspire, and raise awareness of Infantile Scoliosis and its treatment/cure. We are in a new phase of our journey, as we are now going through adolescent scoliosis, but the message is still the same. Please share our story. For more information please check out http://www.infantilescoliosis.org/ 

 Hello! Long time no see! Olivia has been cast/brace free these past 8 years. During that time we continued to monitor her back with annual x-rays at Boston Children’s.

Olivia 2018

Olivia 2019

Olivia 2020

Olivia today

 In 2019, Dr. G moved on to a new position at another hospital and we are now cared for by Dr. B. It was also around this time that I expressed concerns that Olivia would soon be reaching her next rapid growth phase with puberty looming. We agreed to start monitoring every 6 months. 

So, here we are. Olivia’s curve has progressed. When we completed casting/bracing in 2013 she was under 5 degrees. Over the years she has stayed relatively low, around the 10 degree range. Her recent x-ray revealed that her curve is now 23 degrees. It also progressed quite a bit from January to now. We have decided that it is time to go back to bracing until Olivia has completed growing, which will roughly be 18-24 months. 

When we started. 40 degrees. 

Where we ended (2013)

Today. 23 degrees. 

Olivia is, as expected, disappointed, but she’s taking the news like a champ. We have decided to continue the blog in this new phase of her journey, to continue what we started, which is to raise awareness, and offer information and support to families going through scoli life. 

This time around, however, Olivia will be contributing her perspective of it all, and will be blogging with me!

Here’s where we are at the present moment. On Friday, we went to Boston Orthotics and Prosthetics, formally known at NOPCO. It’s here where Olivia gets her initial brace fitting. You can click here to read our post from 2013. This post gives you a little background on the Boston Brace, and it’s neat to see how technology has changed these past 8 years. 

We went to the Waltham location. Just as before, Olivia was first given her undershirt. She will wear this under the brace to reduce chafing and skin breakdown. The undershirts have a silver threading inside, which acts as an antimicrobial to help reduce the stinkiness. 

Olivia needs to wear the brace 20 hours a day. She can take it off for showering, and physical activities. She will have to get used to sleeping in the brace, but doesn’t have to put on hold the things she loves like dance and softball. 

Olivia’s previous brace was the hard shell and then padding inside to push her torso in the right places. Back then they used an infrared sensor to scan her torso to shape the brace. Today, they use technology on an iPad to get a more accurate scan, eliminating the need for the padding. 

Another addition is you now have the option of having a button installed in the brace. This button detects heat, which indicates the brace is being worn. This way, you can easily track your brace wearing time, which can help the doctor determine it’s effectiveness etc. 

Olivia was scanned and measured. She was checked for flexibility, and measured sitting down to see how she sits and where her natural waistline is. Lastly, she got to pick out a pattern for the brace. There were tons to choose from. She went with “tattoo.”

Brace Pattern “Tattoo”

It typically takes 2 weeks for the brace to be ready. With it also being Labor Day week, we will have to wait until the week after. Olivia will get her brace on September 17th. That will be a long appointment. It takes about 2 hours for them to properly fit it, and trim it to her, so that she is as comfortable in it as possible. Following that, she will then meet with PT to learn some exercises to do in the brace, and nursing to learn proper hygiene and brace care. 

On October 28th she will get an X-ray in the brace and meet with Dr. B to check in and see how she’s adjusting. Then from there it’s monitor every six months. 

I’d like to end my portion of this post with a shoutout to Lauren of Higgy Bears! Lauren is a scoli warrior who started this business to bring braced stuffies to children going through bracing and surgery. You can check out her story and business here! We’ll be surprising Miss Olivia with a unicorn wearing a brace that matches hers to help make the experience a little more “bearable.”

Now, onto Olivia’s post….

Getting a back brace

                         

       When you hear you have to get a back brace lots of emotions run through your head. You probably get really nervous about how you look or how this will effect your personal life and a whole bunch of other stuff. One of my biggest worries is going into middle school. Now I’m going into fifth grade but I have to have the brace for two years so I will go into middle school with it. 

Some of you might think about how the kids will react to your back brace. I’ve learned that at this stage of your life there will be other kids going through the same thing so when you get to middle school there will most likely be other kids with back braces too. 

Now with your personal and social life, I don’t know how long you have to keep your brace on for every day but I have to keep mine on for 20 hours a day. So I get a break for four hours a day which gives me time for my after school activities. So you do have to sleep in the brace but I’m hoping that will not be problem. It might get some getting used to but I think I’ll be fine. I hope you have a nice rest of your day and I be back soon.