As we are wrapping up our time at KKI it's time to start thinking about what changes we need to get documented for our home nurses, therapists and doctor. Fortunately, I was in the room when the doctors came around to visit Lily so I was able to go over my list with them. So hopefully we will have everything we need for smooth transistion home.
We had more mixed success in OT working with the switch. I say mixed because we tried some different hand positions before going back to the one we used previously. Lily appears to have the best response when using her thumb and middle finger to press the switch. Sometimes she will even flex her wrist. The micro light switch is easiest for her to press, but probably the most difficult to position consistently.
While stretching in PT we discussed Lily's right foot. The taping does seem to be relieving some of the muscular tension, but the therapists are starting to wonder if we are also dealing with a structural issue. Her leg bone might have curved a little bit, which would explain why we are having such difficult time bring her ankle to neutral without causing skin irritation. Short term our goal is to provide support without harm her skin. When we get back home we work with her orthotist to modify her splint, and during our follow up appointment with Dr. Sponseller we will have him take a look at her leg.
Down in the therapy center we tried our hand at making paper flowers. Not quite Martha Stewart, but we did all right.
On Wednesday morning, the entire team “rounds” on all of their patients. Which that means all of the patients have free time and the therapy center becomes a zoo! A fun loud crowded zoo.
Lily did okay initially but you could tell the sound was starting to overwhelm her so we went back to our room a little before noon to decompress before having lunch.
Just thought I would mention that I am writing this post up from the “temporary” Parent's Lounge. The regular lounge is a nice but claustrophobic affair, it has two bathrooms (w/ showers), lockers, microwave, fridge, ice, water, coffee, TV, computer and even a small library. They manage to cram a ton of services into a tiny space and I am thankful for all of it.
The lounge was moved temporarlily while they do some building maintenance. While the temporary location doesn't have all of the same features as the original it does have windows!
I will leave you with my current view: