Time flies...

when you are having fun. Is that the saying? LOL

Well, we are having fun here. Its hard work taking care of her - well, more time consuming and never ending, but well worth it.

Sara is doing GREAT! Her lungs have been improving, she breathes easier. She has been getting more movement and is participating fully in her therapies.

On the movement front - she is now able to move her head side to side, nod up and down, pick her head up when she flops forward to the right side, still working on the left. When she picks her head up off the pillow she is also getting her shoulders off and moving, and that is moving her arms slightly. She also is able to extend her fingers from neutral. Involuntarily, she is yawning and stretching and shifts her own position in bed when sleeping. Those involuntary movements are normally absent in locked-in patients. Her range of motion exercises are going very well. She has improved quite a lot even in the three weeks she's been home.

On the voice front - her speech therapy is going well. We have been working with her taking deep breaths, then we plug her traech so air will move through her throat, and she is trying to say "ah". It comes out a little cracky, but she's definately moving across those vocal cords. Her neck strength will help that, and she gets so excited when she hears any of her voice come through. We do that a couple of times a day.

On the occupational therapy front - she has a wheelchair with a great cushion in it. She's been getting up (ok, we get her up in a hoyer lift and put her in the chair) and spending between 2 to 5 hours in the chair a day. We'll be working up to twice a day for the same periods. The goal being that she does not fatigue and is reasonably comfortable in the chair.
Also, due to her amount of head, neck and mouth movement available, the OT is going to add a mouth wand to her therapy. That is basically a Y that she bites in her mouth with a long pointer on the end so that she can touch the computer or hit a sensor or actuate a buzzer. Either way, she's getting function back, slowly but surely. She gets so excited when she is able to do something for the first time, and even more excited when she is able to repeat it. She works it and works it until she can't anymore. Just wait until we get that head and neck all stabilized...we'll start working down the body (like the nerves do).

She and I are going to watch Heroes. She's up in the chair now. Its good for her circulation and heart. Basically part of her daily workout. And, sitting next to her i'll flop her head off to the left and push her to pick it back up.

Since she's home and stable we're going to go ahead and open it up for friends to come by and start visiting her. Up to now its been family and Sara's closest circle of friends. But anyone who knows her and would like to visit can give me a call to schedule. We have a big white board calendar we put all that stuff up on so we won't overwhelm her. But, truly, she is doing well and would love to start seeing other people she cares about.


I've taken her outside to the yard at night and we've just looked up at the stars. She gets