May 15, 2002: Astounding physical achievements and thanks to all those who helped.
Crystal has some even more exciting news attributed to the amino acid diet, her additional supplements, and the awesome professional team that helps Crystal fulfill her needs.
Today, Crystal has two accomplishments to share with everyone. And I will describe the first one now, which is something she has actually been doing for a couple of months now, her therapies continue to involve this exercise into her sessions, she has now mastered this and I felt it important to mention so everyone can see exactly how successful Crystal really is. And it must be understood that her success would not be possible if it were not for her determination and strength at heart.
Coming to a standing position all on her own from leaning on a chair that is approximately a 5 inch push: Now that Crystal has reached the goal of being able to do more activities solo for her legs, her strength is just blooming everyday. Sky is the limit...Not what the experts say!!!!!!! She has two favorite activities that she sits in a position on the edge of the seat which positions her about 5 inches away from a standing position. For a while now she has been exercising by coming to a stand from this position on her own. Yes, all on her own. We stay near of course and guard her to avoid any falls.
Crystal participates mostly with Jill Cannon, her developmental therapist, in their session together. On Tuesday morning, May the 14th, Jill placed Crystal in her chair for the last half hour of their session. I still watch with amazement when I see her doing this exercise and the last few times I especially opened my eyes as I realized how easy this has become for her. She really doesn't compensate and struggle or lean or even use other muscle groups to assist her in coming to a stand she mainly uses her legs and she will use her arms and hands to push on the arms of the chair.
As Jill and I were talking at the end of the session, Crystal remained in her chair, still standing up and then sitting, standing, sitting, standing, sitting....Jill left and I began to talk to Crystal and she started giggling. She was just very playful. She gets silly giggly sometimes. I asked her what she wanted to do now. She said, "Stand up." And then gave me a big smile. Which Crystal, if given a choice would rather you help her walk or stand all the time, but then she said, "No, sit down!" and giggles some more. And then she went into repetition: "Stand up", "No, sit down", "Stand up", "No, sit down"....And continued doing this for another half an hour after her therapy was over!!!!!!!!!!!!!! She just didn't seem to tire today at all and I don't know how long she would have continued doing this, because she ended up getting side tracked and involved with doing something else. Hooray, for Crystal! This was Jill Cannon's idea and project.
The second triumph: SCOLIOSIS!
Crystal had a scoliosis series done about 6 months ago, that revealed her to have a 25 degree scoliosis curve in the thoracic region and a minor curve in the lumbar region. It also showed however, that the curved was not in fact fixed, and that it was due to muscle weakness. The orthopedic surgeon determined that it wasn't necessary to do anything for this curve other than monitor it at this point.
Last week we had a 6-month check on the progression of her curve. Crystal's doctor's office told me yesterday what the results were....................
The results were that her curve had decreased by 5 degrees?? What? This is not supposed to happen with SMA children. At least not that I had read or heard of from anyone. I was, in fact, researching so that I could educational express my concerns with the doctor that some form of bracing should be applied to Crystal to help delay the dreaded spinal fusion. I am especially interested in hearing any comments anyone has concerning this issue if you want to email me. Thank you.
Credit for this must be given to the following individuals for all of their hard work and ideas to this issue:
Conrad de Jesus
Thank you so much, with an issue as delicate and fragile as this and being told that progression was inevitable..."It is not engraved in stone until it is all over and done with"