August 7, 2014
Well we had a great visit at Boston children's today. Sofia is still maintaining her strength, and if all the Isis clinical contracts get finalized this week, Sofia may begin her clinical trial as soon as the end of August! The clinical trial will be extremely involved. In the beginning phase she will get a lumbar puncture of Smnrx Gene or placebo (we won't know which) every 2 weeks for 6 weeks and spend the night in the hospital each time. The trial is about 14 months long. The goal is to stabilize or even improve Sofia's strength. We are scheduling to have a g-tube placed (feeding tube) as a precaution. We would be unable to have a g-tube placed if we wait til she cannot eat on her own because she may be too weak for anesthesia. So as precaution she will have one, if and when the time comes that she might need it. So far so good. Living each day "moment to moment". Thank you all for your support