We're starting to believe that when everything is said and done Emily will have walked the equivalent of the New York marathon (as opposed to any other marathon of course) in the parallel bars. That's not intended as a complaint or a criticism, but it is an example of just how hard she's willing to work and how great her attitude is. Three days a week she spends the better part of an hour working on walking in the parallel bars. Sometimes it's walking; other times it's balance and weight shifting. All of it's important and we continue to see improvement every single day, but her positive attitude throughout is an inspiration.

Other therapies continue to pay dividends. She's getting more and more small movements in her right arm. Today she was able to hold it at her side relaxed and bring it forward. Starting next week she has another round of nerve block injections to endure. We know that controlling the muscle tone is the key to getting more use of the arm, but none of us are looking forward to the injections.

We just completed another round of cognitive testing. Emily showed a minimum of 3 grade equivalent improvement in every area since the testing 3 months ago, with a 6-grade equivalent improvement in at least one. We're hoping the comparison of this round of testing with the September testing demonstrates to the powers-that-be at DPS/DSA that there's no reason to believe that our goal of returning to school (at DSA!) next Fall is unreasonable. We have yet another meeting with yet another new face at DPS next Monday. What a wonderful system. On the bright(er) side, Emily's doing well working with her home school teacher to finish up her assignments from last Spring. It's interesting that it took us over 5 months to get her re-enrolled at DSA, but once she was re-enrolled it took DSA less than a week to bill us for the math textbook she didn't turn in last Spring. What do those DPS banners around Denver say? "Putting kids first;" I'm not sure I agree. Not once has anyone with DPA/DSA (other than her teachers) said, "what's best for Emily?"

We have to apologize to all of the wonderful folks that contributed to the "Keep Emily Skiing" fundraiser - we've just been so busy (and tired) that we haven't gotten notes to all of you. We will. We truly appreciate your support. For the time being, Emily just isn't ready to think about skiing with the NSCD. She's starting to really understand some of her physical limitations and the thought of skiing is just too much right now. We'll get there, but we wanted folks to understand.

Emily embarked on a new challenge yesterday. Celeste, her physical therapist, has decided that walking with a cane or hemi-walker is too difficult for Emily. Her left hand still has tremors and she gets so fixated on where she's placing the cane that she doesn't maintain her balance or take the good steps she's capable of. So Celeste's new therapy goal is to get Emily walking without a cane. She started yesterday with Emily walking on a treadmill for 9 minutes at .6 mph without a harness. Ken and Celeste were there to help with balance, but Emily did all the work herself. When she started using the treadmill a few weeks ago she was walking with a harness that supported about half her weight, at .1 mph, for 2-3 minutes, with Celeste helping with every right step. After she walked on the treadmill yesterday, she worked on balance in the parallel bars - standing on just her right foot and letting go - and then did some walking with her cane. She did two more hours of therapy - speech and OT - took a break for lunch and a rest, did an hour-long mat class, and came home and worked on her computer.

She's currently writing a sequel to the fantasy novella she wrote last year. This is something she came up with all on her own. She 10+ pages into it. She knows that the best way to get back to DSA is to prove to them that she's still a writer. I hope that's enough.

Emily's getting some really good forward/back and up/down movement in her right shoulder. The arm is still incredibly tight and often very painful, but purposeful movement is a good sign. She was even able to straighten her fingers out while we were stretching it in therapy last week. She's scheduled to have another round of nerve-block injections in her right arm/shoulder next week, which won't be fun but should help with the tightness and pain. Her fine motor skills with her left hand are also improving - she's much steadier eating and can pick up small objects more easily.

Her right eye continues to heal. She nows uses both right and left eyes for everything she does at the mid-line. She's even reading with both eyes. She very seldom gets so tired that she asks for her other glasses with a full right-eye patch. We're starting to see some progress on the looking up and that's encouraging for both up and down convergence in the future.