She's All Made of Hinges

Annie's knees are bending again!  And so is her back, which we wish wasn't!  We had a follow-up with two of Annie's orthopedists last week to continue to monitor her knees since surgery to remove her kneecaps, and her spine because of her worsening scoliosis.

As for her knees...

Annie no longer has to wear her straight-leg braces during the day!! Wahoo!  No more elevated foot rests and uncomfortable sitting!  Annie still needs to wear her braces at night to help stretch out her tight hamstrings though, and she does NOT like it! 

Having her kneecaps removed has also removed the fulcrum that helps Annie straighten her leg on her own.  This makes her quads need to work even harder, which is difficult for her since her quads were already weak to begin with.  Her hamstrings have always been tight, so this procedure has only given her hamstrings even more power over her quads.  The result is that Annie can now bend her knees on her own, but is unable to straighten her legs on her own.  It has really only been a problem so far when she's resting on her bed and pulls her knees up to stretch and then can't straighten them out again.  She gets uncomfortable and frustrated until we straighten her legs out for her.  I don't know if she'll ever gain enough quad strength to straighten her legs out on her own again, but even if she doesn't, it will still be worth it to have eliminated the pain from her dislocating kneecaps.

Annie can now bend her knees to a 90 degree angle and is doing well adjusting to sitting in her chair normally again.  The only problem is that the movement involved in bending or straightening her knees is still extremely painful.  She's essentially back to the same amount of pain she was in before surgery--she's fine once we have her situated in her bed or chair and quit touching her, but anything that causes motion in her knees like transfers or clothing and diaper changes, causes quite a bit of pain.  We're hoping that that is just because of tight scar tissues in her joints that needs time to get stretched out and broken up.  She'll wear her braces at night for another week and then we'll return to her doctor in June to figure out where to go from there.

As for Annie's back...

We're glad Annie's knees are bending again, although painful, but we sure wish her back would QUIT bending!  Annie had another x-ray of her spine to check how her scoliosis curve is progressing.  Annie has three separate curves in her spine needing correction.  But we've generally just been referring to the largest of the three curves. Last August her largest curve measured at 55 degrees, and in January it jumped to 68 and the doctor was telling us to prepare for surgery.  Her x-ray today showed her largest curve at 72 degrees, but they say there's a 5 degree margin of error, which means the doctor is considering her curve as unchanged.

He still anticipates the need for a spinal fusion, but he says that as long as it continues to remain around the 70 degree mark, we can continue to postpone surgery.  The dilemma, however, is that the smaller the curve is when operated on, the easier the procedure, and the better the result.  The rule of thumb is that the curve can usually be corrected about 50%--meaning Annie's post-op result would be a curve of 35 degrees.  But the doctor is optimistic because he thinks Annie's spine is still fairly flexible, and realizes that the older (and heavier) she can get before surgery the better.

So we are relieved right now that she won't be having surgery over the summer and that we'll be able to go on her Make-a-Wish trip first.  So the soonest she might have surgery would be October, but we're hoping to push that even further out if we're able to.  She'll return in August for another x-ray to make sure she doesn't go too long with an undetected jump in her curve.

And now that we have at least a 6 month plan for no spinal surgery, we are able to move forward with Annie's new wheelchair.  It's an incredibly long story about why it's taken 9 months to get this new chair--partly insurance issues, and partly the spinal fusion surgery issue.  But now we are moving forward with ordering the custom molded seat back for her new chair.  We weren't sure we'd be able to get it if spine surgery was going to be soon, but now the custom molded seat back has been ordered and we'll hopefully have her new chair in about a month.  The custom molded seat back is essentially half of a back brace and should support her better and more evenly.  This will hopefully prevent her scoliosis from getting worse, at least as fast, and improve our chances of delaying surgery even longer.  But most importantly, it will help Annie sit more comfortably in her chair without getting pressure points.

It was wonderful to get all this good news last week about her knees healing, about not needing surgery for 6 months, and about getting the best seat back for Annie's new chair!  We're looking forward to a hopefully healthy and medically uneventful summer!