Scoliosis Update: Life with a TLSO Brace

I write letters to Ellen DeGeneres. No particular reason. Just because I can.

Dear Ellen,

It’s been a week since I took Baby Girl to Atlanta to get her TLSO brace.

 

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Full disclosure: I had to look up the abbreviation. It stands for Thoracic Lumbar Sacral Orthotic.

 

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It’s similar to the cast in that it wraps around her torso but it can come off for bath time and pool time – both of which she’s been thoroughly enjoying.

The technician in the office who brought as the back brace showed me how to put it on her. “See these grooves that jut out on both sides?”

I nodded. The grooves were on the inside of the brace but were clearly visible.

“They go up against he soft tissue that’s between her hips and her bottom rib.”

I watched her put the brace on Baby Girl. She had Baby Girl sit down. Then she made some marks on the bottom of the brace where she was going to remove some of the foam padding. She came back a few minutes later and then had me put the brace on the baby. I put the brace on, trying to align those grooves with the soft tissue between the ribs and the hips.

 

 

“You did good, Mom.”

But apparently good wasn’t good enough. She raised the brace up on the baby. I tried to focus on how high the brace was supposed to go. The front side had a foam pad that went along the top of her neck. On the rear side there was almost an “M” shape to the foam padding on both the top and the bottom. It kind of looks like the McDonald’s Logo.

 

 

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On the top of the backside of the cast, the two curves to the “M” rose along each side of her shoulder blades. On the bottom of the cast, the “M” is upside down and each curves travels down her back side, one along each side of her hips toward her butt.

“Did the doctor tell you how many hours per day she was supposed to wear the brace?”

“He said she had to wear it more often than not.” I assumed it was a 24/7 kind of deal – with the exception of bath time.

“So she has to wear it for 23 hours per day. You can take it off of her for one hour per day to give her a bath or pool time. If the brace ever gets wet, wipe it down with a towel and then let it air dry before putting it back on her. Do you have any questions?”

I had a million questions.

  • How long will she have to wear this before she won’t require any more treatment?
  • What are the winning lotto numbers?
  • Did I turn off the coffee maker before I left?

But when it came to the actual back brace, my mind went blank. I knew I wasn’t comfortable putting it on her because when I did it was too low. But I figured I’d get used to it.

“Well, if you have any questions you can call us. Also if you have any concerns about the cast or if you see any marks on her body that alarm you, you can send us a picture.”

“Good to know.”

And off we went back home. Baby Girl was unphased by the back brace. It didn’t bother her one bit. And then I took it off for pool time. That’s when things got interesting.

 

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We had some friends over for the 4th of July and invited their kids to splash in our kiddie pool. Baby Girl made it very clear she wanted pool time as well. I took her out of the brace, put her in her swimsuit and let her enjoy herself. After pool time came bath time. And then I put the brace back on her. I had no idea if I was doing it right. But, it was on her and she seemed unphased.

July 5th – we decided to take the kids for a car ride. I put the baby in her car seat. Within minutes she was screaming her head off which is unusual. Twenty minutes into the car ride, she was still screaming. My husband and I agreed that we should take her home. The screaming is atypical for her. Granted, she’s spent a lot of time in the car this summer. One possibility was that she just didn’t want to be in the car anymore. The other possibility was I didn’t put the back brace on correct. 

My husband dropped the two of us off at home. I took the brace off of the baby and let her run around for a while. That seemed to help. One hour later, I put the brace back on. She seemed totally fine.

July 7 – I gave the baby a bath. Afterwards, I put the brace on. This time there was something wrong but I didn’t know what. Putting diapers on is always a tricky business. We have to tuck the diaper in underneath the brace. This was the same thing we did when she was in a cast. But in this situation, the bottom of the cast – where the upside down “M” was, was down very low which made it even harder to get the diaper on. I took the brace off, raised it on her torso, and refastened the velcro straps. Then I put her back down so I could put her diaper on. But the bottom part was still very low on her. Something was wrong. I needed someone to tell me what I was doing wrong. But Atlanta is a very long drive to make just to have someone from the Orthotics department take a look. I knew I could send a picture but what I really wanted was for someone to show me in person how to put the brace on.

Not so long ago, my local hospital had a surgeon who prescribed back braces. That meant that somewhere in Augusta, there was an Orthotics lab that made those braces.

July 8 – I’m getting ready for a doctor’s appointment. My doctor’s appointment. Because it’s summer, I have to bring all three kids. I can’t even begin to tell you how thrilled I was to bring all three kids with me.

 

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The appointment was later in the morning which gave me some time to call the hospital to find out who made their braces. One phone call was all it took. Actually it was two phone calls. One to the hospital to get the name of the off-site lab. The second to the actual lab. Even though Baby Girl is receiving her treatments in Atlanta, the local orthotics lab was more than happy to help.

“The only thing is,” the lady on the other line said, “We can’t make any modifications to the brace. That will have to be done in Atlanta.”

“No problem. She doesn’t need any modifications. I just need to know up-down-left-right.”

I grabbed an appointment for early afternoon. Immediately after my doctor’s appointment, I hauled all three kids across town to the Orthotics lab. We waited for about twenty minutes before being seen. Once in the examination room, I took Baby Girl’s dress off.

The technician looked at her. “Well, I see what the problem is.”

“Good. What am I doing wrong?”

“It’s upside down.”

“It’s upside down?”

“Yeah, one of the ways you can check is by looking for this label.” He turned the brace sideways and showed me the label the Atlanta Orthotics company placed on it. “If the text on this label is upside down, the whole thing is upside down.”

 

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So, there you have it, Ellen. It was upside down. I had him use a Sharpie to draw a line on Baby Girl’s undershirt (the shirt she’s supposed to wear under the brace) to show me where the top of the brace should fall on her chest and then we left. Glad I didn’t wait for her one-month follow-up appointment to find out I was putting her in it upside down.

And because I know this is the only reason people read this series, here are the long-awaited pictures of Baby Girl in her back brace.

 

 

 

Sincerely,

A. Marie Silver

 

Thanks for shopping Snark, Sass, & Sarcasm! I’ll see you next time.