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.  

A Christmas Miracle

This is not a scoli story but an important one nonetheless.

One year ago today on my late grandmother’s 85th birthday I found out I was pregnant with James. 

I was at my therapist’s and we were talking about the next frozen IVF cycle I was about to do. She had been tracking my cycle and asked if everything was progressing on time and I told her no that I was five days late. I continued by saying I wasn’t thinking much about it because I had been late before and that never meant anything. She said five days is a long time and didn’t I want to get that checked out? I responded with a shrug and a maybe. 

After three years of negative pregnancy tests one tends to not get their hopes up. She however put a bug in my ear and really got me thinking. I had forgotten my wallet at home that day so I scrounged up some quarters and stopped at the nearest Dollar Tree to purchase the finest pregnancy tests 8 quarters could buy. I bought two boxes and headed home...

A few weeks before Thanksgiving I was driving Olivia and myself home from school. I remember exactly where we were on our route home when she said the following, “Mommy! I know what I’m going to ask Santa for! I’ll ask him to have a baby in your belly for Christmas.”

As I stood in the bathroom and watched that pink line appear on the test, I proceeded to laugh out loud. My daughter was going to get her wish. 

Truly in awe of what was unfolding, I was compelled to write a letter to Santa. The Santa at the Swansea Mall has always had a great relationship with Olivia. She would visit him on a regular basis and he recognizes her and remembers her name. This is the letter I gave him:

Dear Santa,

I'm writing to you to thank you for all you stand for, and what you have done for our family. As you know, your buddy Olivia asked for two things this Christmas; a cupcake maker, and for a baby sister to be in her mommy's belly. What you don't know is that we've been struggling with infertility for the past 3 years. Olivia and I were on our way home one day when she told me she was going to ask for a baby sister for Christmas. She never asks for that nor does she know how hard we have been trying including medical treatments. It truly broke my heart and I explained that she is certainly allowed to ask but that it might not work out.
My faith in the Christmas spirit, miracles, and the belief in Santa and the magic and wonderment he instills has forever been cemented. We are pregnant. No doctors. No treatments. A completely organic pregnancy.
I remain cautiously optimistic as we suffered two miscarriages this year, but there's just something about this one that I can feel in my heart that this time it's going to work out.
So I thank you for providing such a Christmas miracle to my family. You have always been so good to my girl and she just adores you. You have been her Santa since she was a baby.
I worry the mall won't be here by next Christmas. I would like very much to keep in contact because you're always so wonderful with Olivia. Here is my email and mailing address. Please consider dropping us a line sometime. I know she'd be thrilled. Thank you. 

I Will Always Believe,

Laura Gustafson
lgustafson1230@gmail.com

We receive emails from Santa on a regular basis now. Of course, she got a little brother instead of a little sister, but we’re all ok with that. Santa got to meet James last week and was thrilled to be able to hold him and chat with his buddy Olivia. 😊

Never. Ever. Stop believing in the magic this time of year can bring. I am so blessed to have my two little miracles. Miss Olivia takes full credit for James being here, and that if she hadn’t wished for him it wouldn’t have happened. I believe there’s some truth in that. 

Magic, particularly Christmas magic, is a sacred and special thing. So is fate. It was fate that I found out I was pregnant on my grandmother’s birthday and fate when I found out on my own birthday that I wasn’t going to miscarry this time. Everything about this pregnancy was magical and surreal. Even when I was as big as a house, uncomfortable, and ready, I was still in disbelief that this was happening. 

I thank the heavens everyday for my Christmas miracle.

A Special Gift

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 http://www.infantilescoliosis.org/ 

A very special moment happened last week. Close to two years ago a dear friend of ours, Paula, asked permission to use a photograph I had taken of Olivia at my sister’s wedding for a painted quilt hanging. Life got in the way as it does and she began working on it six months later. Paula remained very quiet about the project and I had not seen its progress at all. Last Monday she emailed me asking if we would be home because it was finished and she was hoping to drop it off Wednesday.

The work Paula does is true art. Every detail is meticulously considered and expertly executed from the selection of colors down to the last stitch. I have seen many of the pieces Paula has created and excitedly anticipated the reveal of the piece she was making of Olivia.

I was beyond blown away by the gorgeous piece she gave us, and the amount of love and care you can plainly see she put into it. The photographs do not do it justice. The most touching part, however, was Paula’s explanation of why she was so compelled to recreate the photograph.

“When I was a little girl I was a tomboy who LOVED cowboy boots. First, I saw the boots and I thought, 'oh my goodness!’...Then I noticed how straight her spine was...I knew I had to make this.”

She named the piece “Reach for the Stars” and created a background of stars because she knows Olivia, and her potential to do great things in this life. She also made certain to display Olivia’s spine on the hanging.

Both Paula and her husband Bruce have become very special to us over the past four years. We think the world of both of them and admire how talented and kind they both are. They have become like family to us, and Olivia loves to visit them.

We cannot thank Paula enough for this extremely special gift. It is something we will always cherish.

Another Year Has Passed

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 http://www.infantilescoliosis.org/ 

It's been three years since we discovered something didn't look right with Olivia's ribs.

 It's been two years to the day that Olivia's last cast was removed and she was fitted for her brace. 

We will be heading up to Children's for her annual some time in July. We, as a family, remain grateful every day for the care we received from Boston Children's Hospital. I am also grateful for finding The Infantile Scoliosis Outreach Program. Without them I think I would have been a ball of panic when we received Olivia's diagnosis. They were an amazing resource as we learned as a family how to live a casting life. 

We were all pleasantly surprised the other day when we received an email from one of Olivia's favorite people, Ben. Ben was the gentleman who fitted Olivia for her brace. She still talks about him and asks when she can go and visit Ben. Hearing from him, truly made all of our days. This is what I love about the people we have encountered at Children's. They touch so many lives, and they recognize and individualize each and every life that they touch. They truly are special people who make such a wonderful difference in this world.

 I check her back on my own periodically and love running my finger down her straight spine. Her favorite part of our bedtime routine is a nightly back rub, something I will NEVER deny her. 

Miss O has had a wonderful year!

She is close to completing her first year of preschool at the school I work at and has learned so much!

She has a new cousin!

She decided she wanted to be Mary Poppins for Halloween.

She made a friend at Christmas.

And she had an Annie party for her 4th birthday.

Our girl continues to grow and amaze us every day. 

We thank you for following along on our journey. Here's to many more adventures!

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 http://www.infantilescoliosis.org/ 

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.