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.
Wednesday, January 23, 2008
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Thank you for continuing to post updates. Our family checks them often and are happy to hear of Emily's continued progress. She simply amazes us. I personally (being a speech therapist :-) am thrilled over her cognitive growth. Wow. I once had a supervisor in rehab who said to me, "That is great if I can walk and move, but, if I couldn't communicate and think, where would I be?" The whole person is important...I just can't help being biased about communication!
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