Thursday, August 30, 2012

PT turns into craft time (again)

Addy has excess plantar flexion (toe pointing) in her right ankle, which is causing her AFO not to fit correctly on that foot. Her PT made a splint for her to wear at night to help stretch her ankle back out, but we've been having trouble getting it to work well because Addy is a tummy sleeper. (I blame it on the fact that she spent literally the first 10 days of her life sleeping on her tummy because of her back surgery, but that could just be a coincidence.) Not only is she a tummy sleeper, she usually sleeps with her knees tucked in. Add in limited skin sensation that keeps her from knowing she needs to shift her position and a night splint that holds her ankle at a proper, 90-degree angle and it adds up to a pressure point forming on her knee.

Unfortunately, we can't just scrap the splint. She really needs to keep as much flexibility in her ankle as possible, both in general and because her AFOs need to fit right. So it's either splint or surgery to address the tightness, and I'm just not ready to jump to surgery (yet). In no particular order, we've tried:
  • Modifying the AFOs to make them work with her stiff ankle.  We've gone back 4 times now, trying different tweaks.  I'm hoping we've finally found something that works, but it still doesn't address the fact that her ankle is stiff.  The current version includes an enormous viewing window at the heel so we can verify when her ankle is seated properly.
  • Using with a longer splint (to prevent her from bending her knee).  It kept the pressure off her knee alright, but it never really fit right since gravity and her stiff joint joined forces to pull her foot out of the splint.  Plus, she slept terribly in it, probably because she couldn't tuck her knee in the way she likes.
  • Trying to train her to sleep on her back.  Even when we've been successful at getting her to fall asleep on her back--which is not often--she rolls over in her sleep and spends the rest of the night on her tummy with her knees tucked under her.
AFOs v2.4Night splint v3.1

Next up: knee pads, which can actually be found in tiny, infant/toddler sizes, but they're intended for use by kids with normal skin sensation to allow them to crawl on hard, rough surfaces (and if the reviews are at all accurate, they don't stay in place very well anyway).  My kiddo has sensitive skin with limited sensation, so hers need to be super soft, super adjustable, and super secure. 

Knee pad project (with optional cat)

I got my hands on some crazy thick felt, so that should take care of the super soft requirement and I added a Velcro strap to one side of it in order to meed the super adjustable requirement (btw, stitched by hand because the felt was too thick to go through the sewing machine).  The "secure" quality is going to come in the form of a pair of leggings, to which I will attach the actual knee pad using even more Velcro, but making sure to place it such that the Velcro doesn't create any hard edges.  It's kind of slow going--did you catch the part where most of it can't be done by machine??--but here's the current progress:

Knee pad 1

Friday, August 24, 2012

Decisions, decisions

There are less than 10 weeks to Halloween. I had thought about having Addy be a pirate this year, but she declared pirates to be scary this week (along with lions, sharks, and thunder). So no pirate. Maybe Tinkerbell or Cinderella? Then comes the real question: Make it or buy it?

Wednesday, August 22, 2012

Meddle not in the affairs of dragons...

Addy has a toy stethoscope that she loves to play with, and with no shortage of doctor's appointments, she sees people use stethoscopes quite a bit. Miss C, Addy's nanny, was a nurse in a former life and brought her stethoscope for Addy to get to try out. She put the ear pieces in Addy's ears and held the other end over Addy's heart.

Addy: "Sounds like..."
Miss C: "Sounds like what? What do you hear?"
Addy: "Thomas!"
Miss C: "Sounds like a train? That's your heart."

Miss C moved the stethoscope to Addy's stomach so she could hear her tummy gurgle.

Addy: "Sounds like..."
Miss C: "Sounds like what?"
Addy: "Dragons!"

Saturday, August 18, 2012

Princesses everywhere

Addy is now fully immersed in that little girl phase of princesses (specifically, those of the Disney franchise, but also princess in general). We got her a read-aloud, condensed version of Disney's "Cinderella" at the bookstore last weekend, but she doesn't like reading the first half of the book--the part before Cinderella becomes Princess Cinderella--so we have to start reading at the part where the Fairy Godmother appears. Funny kid!

Friday, August 3, 2012

So Esiketed!

Addy had her last treadmill therapy session this week--we'll probably do another round in a few months, but decided to give her a break from it for a while so she can be extra "esiketed [excited]" when she gets back into it. She came home from the appointment with a gait trainer to use at home!

Gait trainer (side view)Gait trainer (top view)Gait trainer

It's quite a bit different from her stander (and she's not quite at the point where the gait trainer is a replacement for the stander). It's kind of like a walker with a suspended seat. There are 4 swivel wheels, so she can go in any direction, and the seat keeps her (mostly) in a standing position. However, all movement comes from her pushing her feet on the floor.