Finally writing the update that I've been holding on to for a long time because I don't like it and it's been really hard for me to talk about. It's a year since we first started on Lydia's scoliosis path, I still don't like it and now I can champion it, teach you all about it, and most importantly, advocate for her.
As you know, Lydia has 22q11 and it affects the midline of her body. What's more midline than your spine? Through her entire life her endocrinologist and pediatrician have kept a watchful eye for scoliosis. Last year I had been noticing some muscle that was more pronounced on the left side of Lydia's spine. At her June 2024 appointment with endocrine we updated x-rays and the measurement of curvature was around 22 degrees. We were then sent to the orthopedic clinic for closer monitoring. We saw them in September and went over treatment options for when the curvature reaches 25 degrees. Then in March 2025, with new x-ray evidence, the time has come to implement those treatments for her 27 degree curvature.
There are two paths. The one not recommended and not very scientifically backed option, which is daily intensive therapies and exercises with expensive equipment or daily trips to the singular provider in the metro area. Even if it did work and was recommended, how are we going to swing 1 hour of therapy and exercises with a 10 year old? It's not as fun as dance practice and riding a bike and it's daily and cost prohibitive. The other recommended and scientifically backed option is wearing a scoliosis brace. So away we went on a new medical adventure and here is our path.
1. New x-rays and getting measured and fitted. DONE.
2. Pick up the new brace and make any adjustments to it. APRIL 11.
3. Work on wearing it a few hours at a time and build up to wearing it 18 hours a day.
4. New braces will be made year over year as Lydia grows and develops.
5. This will be worn 2 years post first menstrual cycle, so into high school most likely.
- Lydia will sleep in it and wear it to school and for most of the evening.
- Lydia will remove it, with assistance, for PE, dance, swimming, and other similar activities.
- Lydia will wear a seamless tank under it and her clothes will fit over it.
- Lydia may need to take it off or adjust it to do basic things like use the restroom.
- Lydia may need seating options in school due to the fit and limitations of it.
The brace will not fix or cure Lydia's scoliosis. The absolute best case is that the curvature does correct itself by a few degrees. The absolute worst case is that the curvature continues to get worse and reaches 45+ degrees and Lydia would need surgery to place rods to straighten her spine. The typical outcome is that the brace is worn as prescribed, keeping the curvature from worsening too much and too quickly through the main growth years. The hope is that Lydia grows and her spine maintains it's 25 to 30 degree curve and doesn't worsen too much more.
Here is a link that provides a quick overview. Lydia's scoliosis is idiopathic and we know that it is more common in 22q11 kids.
Here is a link to the type of brace Lydia will be wearing. She picked out the blue swirl pattern you'll see in the picture and hers will have front closure straps. Also, they inserted a monitor that detects body heat so we know exactly how many hours a day it is being worn.
I'm better at talking about this so feel free to ask questions if you want to learn. I'm pretty much over the grieving period that made me cry a lot. That is my normal path with all of Lydia's diagnoses. You'd think I'd be better at it all by now but I'm only better at recognizing it is my path. It's just another thing that will make her different, or let's say unique, approaching middle school years. The need for this, the brace, the wear time - that's the easy part I think. Lydia can manage all that, she triumphs over hard things. It's the middle school mean girl routine I'm most worried about for her. You hear that kids these days are kinder and more inclusive, well, here's hoping!
Right now we are battling skin breakdown on her hip bones and along the bottom of her breast bone where her sternum wires from open heart surgery make it protrude.
Thanks for reading and not taking it poorly that I needed to write this to you a year after the fact.
I only have one picture of her in the brace when it's not covered up. She's adjusted to it beautifully and rarely ever complains. What can't this girl do? She's been dealt a difficult hand and I like to believe that it's all building her up to change the world one day.
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