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/
We certainly enjoyed a few weeks cast and brace free. Olivia was fitted for her brace on Friday June 21st. The week leading to it I prepped her as best as I could explaining that she was going to get a new "turtle shell" and that it was like the cast but it could come off. She would always say "yes" to me. I would ask her how she felt about that and she would say "sad. no cast". So I was very nervous about how the day would go. As always, she surprised me!
We went to NOPCO (National Orthotics and Prosthetics Company) at Children's for 11 AM. I misunderstood at our last appointment and I guess that I had to make a nurse's appointment directly following our brace appointment to receive information on wear and care for the brace. I didn't learn this until the following Monday. Oh well. Our brace tech, Ben, did an awesome job filling us in and we haven't had any problems so far.
I had been warned by other scoli parents that NOPCO can take a long time, so I was prepared. I'm telling all of you so that you can be prepared as well. Our appointment from start to finish went from 11:00 AM to 4:30 PM. Why does it take so long? Your brace tech uses this time to trim down and better mold the brace to your child to ensure that they can wear it comfortably.
We went in and Olivia had to put on her undershirt, and Ben brought in her brace. Initially the brace was VERY high, and VERY low. I remembered at our initial fitting being told that they make the brace in full and then trim as needed. Ben (who Olivia still talks about btw) put the brace on her and then marked in sharpie where to trim. He then took it off and went into the shop to trim it down. He was back in about ten minutes and had her put it on again, made more marks for trimming and then said we could come back in a half hour. At that point we went to get some lunch.
When we came back she put the brace on again and he had her sit in it so he could look at her back side, under arm, and legs. He made a few more marks, trimmed and came back. Each time he put the brace on her he asked her how it felt, and she would tell him it was tight and show him wear. It was amazing how well she was communicating. She was also extremely well behaved and did everything Ben told her to do. He really took to her and you could tell he was doing everything he could to make sure she was comfortable in the brace. He then took the brace one more time to the shop to flare out the legs a bit to make it more comfortable when she sat.
When he came back he showed me how to put it on her and made the initial tightening marks on the velcro and the final tightening marks. Olivia needs to "break in" the brace. Because she was in a cast breaking in for her is a little different than for an adolescent wearing something on the torso for the first time. We were able to start her on stage two and tighten it all within the first week. You can see what I mean here. For the first five nights she didn't wear the brace overnight. She has been wearing it overnight since, with no complaints.
Ben wanted to make sure things were going well so when we go back on the 26th of July he wants to see her and check out the brace. As we were checking out (and I was maxing out my credit card $$) Ben gave Olivia sticker AND chocolate. Heehee.
On the 26th we go to see Dr. Glotzbecker so he can check out how she's doing in the brace, and they will do an xray to make sure the brace is working ok.
Olivia loves her brace. She shows it off to everyone she meets. What I think helped was when she went to play with a group of kids and one of them hugged her and he looked at me and said "Whoa. Her back is hard....what's on it?" I had Olivia show him her brace and he was like "That's cool!" She was really proud of that. She loves the attention.
Brace life is different from cast life. For starters she can get wet and it's ok! We just wipe the brace down. She gets four hours a day out of the brace which means cuddles and baths! The brace affects diapering. Because it rides to her tush in the back we have to take it off for every change. Luckily she's been really good about it so far. If she ever gets difficult about wearing her brace then this won't be fun. We are going to attempt potty training, but she has been meeting this with some resistance so we're going to ride things out the way they are at the moment.
The brace is very slim, so when she wears certain clothes you can't even tell she has it on. Technically she's supposed to wear her pants over the brace meaning they all need to be elastic waist. I've been finding, however, that even though I put them over the bottom velcro, they still fall under the brace when she runs around and plays. Trial and error I guess. Dresses are pretty awesome right now.
On Wednesday Olivia took her first swim class in over a year and a half. She clung to me for dear life, but sang all the songs and overall had a nice time. She also had her first dance class, and was amazing. Overall, life in the brace so far has been going very well, and it's shaping up to be a great summer!