Hi Everyone:
Unfortunately we are still in the hospital with Gwendolyn and are still not 100% certain what type of neuromuscular disease she is suffering from. The good news is that she is continuing to show slight signs of improvement in both muscle movement and direct feeding every day. The not so good news is that last week we received word from the government testing lab that the first sample tested negative for botulism. We sent a second sample and heard from the lab today that that sample tested negative for the botulism organism as well. As a result, she will be undergoing a procedure tomorrow evening called an electromyogram to measure the electrical activity in her muscles and nerves. The procedure will further and more definitively test for botulism (which is still a real possibility despite the two negative lab results) as well as two other rare neuromuscular diseases. The results of this procedure should eliminate certain diseases and hopefully lead us down a more clear path with respect to diagnosis. We are still hopeful that it is botulism as that would be the easiest to treat.
Thank you for the continued calls and emails of support. We appreciate them all. Please know that Victoria and I are doing as well as can be expected and that Gwendolyn is making it much easier on all of us as she continues to smile and laugh through it all.
Bill and Victoria