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Published on Aug 30, 2009
Alesia was diagnosed with spinal muscular atrophy type 1. SMA affects all voluntary muscles and this include breathing and swallowing. Lately we are trying to keep Alesia close to vertical as much as possible. There are a lot of complication that arise from staying to long in lying position (joint contractures, intestinal transit issues, bone density issues, wrong perspective on the world and the list can go on and on) and in the same time we may get a lot of benefits from keeping her in standing position (or close to). This is not easy because she can not swallow (yet) and we have to be very careful with the secretions not go on the wrong way while in elevated position, careful with her fragile little bones. We received a nice stander and we started to use it and Alesia love it. It will take a while until we will know hot to use it properly but we are learning each day.