She wears it to bed most nights, takes it off first thing in the morning for a bit of a break for a shower, & during breakfast. Then it goes back on.
We homeschool, so most of her brace hours end up being at home which is nice for her. But, we do still have many days where she needs to wear it out to classes & groups, on errands, shopping, to church, etc.On days that are heavy with after-school activities we need to be sure to get those hours in during the day.
There are days now & then when 18 hours doesn't happen - extra dance rehearsals for example, or a special outing or event, being sick & curled up in bed, or an 8-hour visit to the ER for possible appendicitis (it wasn't the appendix but was still very painful)...
In a few weeks she will go to her back doctor for a series of x-rays to see how she does without the brace on compared to when she is in the brace.
She is hoping to be able to reduce her hours in the brace at that point. A lot. The doctor told her last time he was hopeful she could reduce it enough to wear it "just at night". For her that was not good news - she would rather wear it during the day and not at night! I don't blame her actually...
I am so glad I found this blog! Not sure if you are still posting but I plan to read through all your posts this weekend. My 12 year old daughter was diagnosed with scoliosis and we are currently waiting for her brace to arrive....she was so pleased to see pictures of your daughter wearing normal clothing. Take care.
ReplyDeleteWe are so glad you found the site useful - that was our hope! There really are many clothing options for cute styles that go over the brace. Favorite stores include Kohl's, H&M, Delia's, and places like TJ Maxx. It takes longer to try on clothes, especially pants, and can be frustrating at first but once you find the style and sizes that work the next time you go shopping will be much easier. Our first trip was during the day so the store was mostly empty & we had the changing room area to ourselves. There area also store staff who would love the challenge of coming up with cute outfits if your daughter feels comfortable sharing the situation with them. We do still post now and then and there are a number of other helpful sites out there. We have some listed on our sidebar. All the best to you and your daughter as you adjust to this new phase of life.
ReplyDeleteThanks so much for replying. We are actually going to pick up the brace tomorrow...
ReplyDeleteI had another question if you don't mind? Do you feel comfortable with all of the x-rays that seem to be a requirement? I am trying to minimize as much as possible. And am finding it difficult.
Thanks
How is the first day with the brace going? There will be a transition but maybe it is good timing to be off school for the holidays during the initial adjustment? Our doctor tries to minimize the x-rays which I appreciate but in some cases you really can't tell what is going on without them. We had them done prior to & at the fitting to get a baseline, & then 4/5 months later in the brace to see if there was stability or if adjustments were needed to the brace. At 8/9 months out he didn't do an x-ray because he didn't see anything different during the physical exam that was cause for concern. We just had an x-ray out of the brace almost a year after she was fitted for it to see if things were holding steady, and she will have one in June I think to see if she can be free of the brace or not. I suppose if he sees things are holding steady by a visual he could opt to forgo the x-ray then but probably to be sure that she can be free of it he will recommend the final x-ray. It is a tough part of the process, I agree. I think there are certain strategic times to have the x-ray and others where it may not be necessary. Where is she being seen? Do you feel confident with your doctor?
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