Brace Day

 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/ 

Night Before Brace with her special unicorn

                                                                         Brace Day

Friday was brace day! It was a long day. We got to Waltham at 8:40 because traffic was crazy. We were seen right away. 

Our brace tech brings in the brace and explains that it’s her job to trim and size it to Olivia over the next two hours. She shows us the sensor that gets installed into the brace, which will use body temperature to monitor her time in the brace. This information goes to both myself and Children’s. 

The sensor

Olivia initially puts on the brace and the brace tech begins to mark the areas that need trimming, heat bending etc. Initially, Olivia felt suffocated in the brace. The brace tech was trying to gauge how confined she feels, which, for Olivia, was impossible to explain, because she has nothing to base it off of. 

First try on

Initially, there was concern that she maybe needed to be remeasured, which would start the process all over again. Happily, once she started to trim, bend, and smooth, Olivia felt much better. As she starts to adjust to the brace, if there are things that need to be adjusted, we can bring the brace back and fix. 

Measuring and Trimming

While we waited, I went through the process of setting up the sensor. In the app, I had to give it a name. Olivia was amused that I named it Bee Bo, After Sandra Boynton’s book The Belly Button Book. 

The two hours were spent by doing fit and trim and fit in trim. O and I watched some Office Ladies cartoons on YouTube to pass the time. In the end, the brace seemed to fit O well. The brace tech marked the velcro fasteners in two spots, the breaking in spots and the final tightness. Olivia practiced putting it on, and I practiced putting it on. We will go back at the end of October to follow up, and see if any other adjustments need to be made. As she breaks it in, we need to watch for areas of irritation. If we see these, we are to go back sooner than later for adjustments. 

Next we headed over to PT. At PT, the therapist looked at her head to toe. First she assessed O’s posture in the brace, noticing that she wasn’t straightening her knees. Olivia expressed that her thighs were tiring quickly, so the therapist said she would look her over out of brace to check her posture, alignment, and flexibility. After her evaluation, she put together a few exercises Olivia will need to do 4 times a week to build her core muscles and extend her hip flexors to help her not fatigue her legs. 

PT

Initial chat

                                                     Trying to pick things up in brace

Evaluation

After PT we went over to Orthopedic to meet with nursing. Here we discussed how to break Olivia into brace wearing, proper care of the brace, and what to look for with her skin. The nurse came in, and said, “I’m going to tell you something weird. Your name seemed REALLY familiar to me. As I was reviewing your file, I realized why. I was your cast tech when you were a toddler. I worked with Dr. G, and put on all of your casts.” It was such a "full circle" moment.

Olivia will work her way up to wearing the brace 18 hours a day. The first 5 days she will wear it for 2 hours at a time for a total of 6 to 8 hours. Then for the next 5 days it’ll be 4 hours at a time for a total of 12 hours a day. Then for the last 5 days she needs to try to increase an hour at a time until she’s in it for the full 18 hours. She will start doing overnight sleeping October 1st. 

She has 4 undershirts. The undershirts help wick sweat, and minimize skin irritation. If there’s irritation we should note it, and try Gold Bond powder. Again, the brace can be adjusted if needed. Following the appointment, we also went out and bought her some comfortable sports bras to wear with the undershirts. We’re also working on pants that fit comfortably over the brace. 

The brace needs to be cleaned every day. Basically, I have filled a spray bottle with rubbing alcohol and I spray it down. This kills bacteria, which will reduce odor. 

I have assembled a “weaning in” schedule for the next 15 days. Olivia and the school nurse will be great friends over this first week of school. It will level off after that. She will have to use the nurse’s bathroom, and should be allowed to move as much as she needs. We will meet with the nurse to go over everything. 

Today is day 6. She has worked up to 10 hours in brace so far. Her skin looks good, and she’s getting the knack of getting the brace on. She is self conscious about how she looks in it, but it will get better over time. 

Thank you all for the warm thoughts and well wishes. She’s a trooper.

 

Really looking at herself in the brace for the first time

Olivia's Corner

     The first time you put your back brace on it’s going to feel different. For you it could be tight or it could feel uncomfortable in some spots, but don’t worry they will adjust the brace. Now, for the first few weeks it will feel weird and unbearable but you will eventually get used to it. Now don’t be nervous, when you first have it on you only have to wear it for a few hours for about a week. Your families will help you adjust with school and sleeping and all of that. 

      So, something that’s going to be tough is eating cause the back brace presses against your stomach so you might not feel good. Now for the girls that are going through puberty and you feel bloated the brace will feel tight and uncomfortable. The doctors will give you suggestions on how to handle it. 

     Having a back brace can be tough and you can feel alone at some times, but remember we’re in this together. 

                               

Fashionista

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.