Sorry about the delay, again. Our oldest (and my favorite) laptop finally succumbed to the virus', and our newest (and the one I almost loathe) had been stepped on, so it's almost impossible to use. Luckily, I can pull some MacGyver tricks and use it. It just drives my slightly batty.
There's been a lot in the past few weeks. We took another trip to Philadelphia. It was just a follow up, to be sure all our plans for surgery are still on track. This appointment, although short, was important. We had a year break, so the doc wanted to be sure the surgery was still needed. A little refresher on the surgery. It will be to nick the tendons on top of the hip to help release those contractions, putting her in a better position to stand. The end result of the appointment was mediocre. The doc is pleased with her progress, and we will hopefully return July/August for surgery. We'll stay for a week; do some therapy and get her fitted for new braces before the surgery, have the surgery, then come home. Then return in a month to get the new braces and her casts off. All in all, it was a nice, smooth trip.
She also had a few other appointments with doctors here at our local Shriner's. Anabelle has a follow up with an ENT for her torticollis. He also is pleased with her progress, and said she should be able to avoid surgery. Which is great because I didn't even know that was in the cards! It's still very noticeable, especially when she is tired. The other appointment was a follow up with her upper extremities ortho. We talked about possibly doing dorsal carpal wedge osteotomy on one of her wrists. It's been decided after talking to wait and see how she is mobile after her legs are taken care of. It may be better for her to leave her wrists as is if she does use a wheelchair later. It'd be easier for her to transfer with flexed (bent) wrists rather than wrists stuck in extension (out straight). We plan to follow up in another 6 months. She also had a photo shoot so we could collaborate with the upper doc in Philly and see what he thinks. Luckily Ana has an amazing occupational therapist who accompanied us to this appointment. It helped to have someone there who spoke the same language as the doctor, and convey what we really wanted to. And just like the two doctors before, this one was just as pleased with Miss Bear's progress. We also got to show off Ana's WREX, although her doc didn't seemed to impressed. She didn't even ask for a demo. It's ok, Ana's still getting use to it.
Feeding therapy has also been in the picture lately. Not sure if I mentioned it before. Her therapist is happy with how in love with food this little one is. We are still under the directive to not even attempt to replace nutrition in any way with oral feeding, but with how much this girl loves her food, it's hard not to think she's getting tons of nutrition out of it. Looking back, she really has come so far with her breathing and eating. It's amazing to see.
Until the next time I feel like pretending to be McGyver...
With love,
The Polks
