Yesterday we went to the orthopedic doctor- this is the second ortho we've seen for E. The first... well... wasn't a "good match" for us. He asked why we would want to do weight bearing and why it mattered whether her hips were in the socket to do it (needing a hip x-ray).
So, not only was I already frustrated with the lack of actual care from the previous ortho, but I've heard a lot of good things about this new doctor from our PT and decided that was what our next step would be. It took a while to get in for an appointment and Mike had to take E for x-rays a week or so ago so they'd be ready before the appointment (obviously I'm little help as far as x-rays go at the moment...).
I can honestly say we were not disappointed. The doctor was a very 'straight talker', didn't dance around anything. He answered all of our questions (our PT went with me), made his recommendations for her, and gave us a good reason for each of the answers he gave.
His suggestion as far as her dislocating her knee, popping her foot and toe joints, her hips becoming dislocated, her knees hyperextending: do nothing. Seriously! He said that according to the x-rays her joints are not being damaged as would a child without the laxicity in their ligaments and hers slip so easily in and out that there's really no rubbing. Her posture is stable without bracing anything except her ankles and some light support on her left knee.
He asked what our goal was for PT, and in all honesty our PT and I were both taken aback a bit by his boldness on this. He said "I'm not sure what the role of PT is at this point." Um... he obviously didn't quite 'get' where Emma started and where she is now. Yes, I realize that the things we're doing in PT are all things I can do at home. And I do. But... I also participate in all of her PT sessions and together we talk through the next set of goals, how to work on them, etc. She's gone from not even holding her head up or sitting to pulling to a stand and cruising in just under a year. She started PT last fall around October/November time period once her heart was healed up. For our goal... I said that although of course walking would be wonderful, reality is that functional upright mobility is more the goal for now. Getting around in some way that's not on the floor. Using a walker, gait trainer, whatever-- but being able to be upright in her environment to get around with functionality. We're definitely getting there. It's still a ways out though.
So... yes, we'll keep PT. And he wrote us scripts for AFO's that go higher up the leg than the sure step since she's starting to pronate over TOP of the sure steps... (which we can't exactly fill right now because insurance won't cover it this calendar year and it would cost over $900 to do...). So in the near future we'll be looking at figuring out how to get those. Whether we do the ones he prescribed or whether we do another that we can order outside insurance through Cascade online that's just a fraction of the cost.
He also said there's no obvious bone fragility or history of multiple breaks that still show. This is great! I've been concerned that she wouldn't even show that she had broken a bone and the way she falls often really makes us wonder... so she ha good strong bones now and apparently a lack of calcium is 'easily overcome' once a good healthy diet is in place, so being home for 17 months has paid off ;)
He really isn't concerned about the future of her joints- which we're very glad about! He does want to see her back in a year for another xray set for scoliosis. He said her back looks good right now, but often after heart surgery has been done that (here's where he lost me) something in the chest bone tethers, and as the child grows the back begins to twist the back and may need to be untethered. I'd never heard of this, but if it's a concern, we'll check on it ag ain in a year. Who knows...
So, I'm actually really pleased with the visit. We've already stopped using the bulky knee braces about a month or two ago- they just weren't functional for the level of movement she needed and only kept her knee from hyperextending. We've just been using an 'elbow brace' on her knee (the Ace type) which helps with just enough stability to help her stand without hyperextending the knee.
One more appointment down!