We knew going into this that life in the brace was not going to be a walk in the park. I mean let's face it - how comfortable can this plastic "jacket" be?!?
I have jokingly started calling her Barbie - between this brace and her orthotics she is pretty much just as plastic :)
However, when I look at just how crooked she is in when she is sitting, it's a no brainer to want to tackle this head on and avoid surgery like the plague.
Once she got the brace she didn't really seem to mind it too much. Have I mentioned before just what a trooper this sweet girl is?!?
We had to take the brace back in a few times to have adjustments made for a better fit. This picture doesn't do it justice, but she was getting a lot of red pressure points that weren't resolving quickly.
The same day we got the brace we had to go back to orthopedics for x-rays to make sure the correction in the brace was accurate. When the doctor came in to see us he said, "it's not a good brace" - my immediate response was Ugh! but then he followed up with, "it's a GREAT brace"! Whew. We talked a little more and he brought the surgery up again and then he called me out into the hallway and showed me before and after x-rays of people who have had to have the titanium rods put in. I don't care how straight they look - I don't want any part of it. His response was, "We don't want to have to correct, but we can if we have to". Obviously I'm not going to let it get to the point that her heart and lungs are affected, but I'm not going down without a fight either!
The picture on the left is without the brace, the one on the right is with the brace.
She wears the brace during the day and although it makes it harder on all of us that have to lift and maneuver her around, it doesn't stop her from using her equipment - or smiling.
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| Riding her new fancy bike! :) |
Alex keeps having major growth spurts - and her growth is part culprit to the curve being so significant. Case in point - the last time she used her walker at home was in July, right before we moved...2 months later you can see from the headrest how much she's grown...
That's the good.
The bad is that she can't sleep in it. She is technically supposed to wear the brace for 23 hours a day. With her seizure disorder, especially since the majority of her seizures involve sleep, or lack there of, it doesn't work for her at night. Alex is quite particular in how she sleeps, and the brace is not conducive for her getting into "her" position, and if she does fall asleep in it, it's not for very long.
Back in the day Alex wore something called a DMO (Dynamic Movement Orthosis) and it really helped her with her back and her positioning. When her back starting getting really bad we re-measured for a new DMO, which is manufactured in Europe. We went three different rounds and each time we got the DMO back Alex had grown and it didn't fit properly. The DMO has panels inside to help combat the scoliosis. The DMO is most effective when the curve has not surpassed a 30 degree curve. Alex is already at 46 degrees. Since she is not wearing the brace at night I figured we would try her sleeping in the DMO - if she's in the brace all day and is HOPEFULLY getting some kind of correction during the day, the DMO would help to maintain that. I'm probably just wishful thinking, but something has got to be better than nothing, right?!? And I will say, I really think Alex likes sleeping in it, my guess is it's something sensory and she feels more secure, but she has been sleeping great, even better than she normally does, with it on. (Please lord do not have let me jinxed myself!)
Only time will tell - we have until the first week of November before we go back for her x-rays to see if this has made any improvement. Prayers are still being welcomed for a miracle correction!
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