We've been noticing Gwendolyn having random periods (semi-regularly and mostly off bi-pap) where she is blankly staring into the distance and is more or less unresponsive for several seconds. Her pupils dilate and/or one or both eyes will travel or float during the episode. It's definitely alarmed us so we brought it up to Dr. Yuan, Gwendolyn's Pulmonologist, when we were up at Stanford about a month ago. She was also alarmed and, at her suggestion, we spoke with our SMA Neurologist at Stanford, Dr. Wang. While he doesn't think that there is any tie between whatever is going on and Gwendolyn's SMA, he recommended that we take her to have an Electroencephalography (EEG) locally to rule out a possible seizure disorder. When we returned from Stanford we spoke with our local pediatrician, Dr. Abbott, and he agreed that an EEG was a good idea; he also thought that having an Opthamologist look at Gwendolyn's eyes would be a good idea as well — that's next.
So, today we took Gwendolyn for her EEG appointment. We were nervous, but as always Gwendolyn shrugged it off and was an amazing trooper through the whole test. It took a little over an hour and Gwendolyn stayed off bi-pap the whole time and patiently and calmly watched her “Who's Birthday Is It?” Dora video. Even the technician was touched by her calm nature. Her temperament through everything that she endures on a daily basis is truly amazing.
No indication on the results yet. We'll be meeting with a local Neurologist tomorrow and will send the EEG results on CD (which we requested) to Dr. Wang at Stanford to take a look as well. We are trying not to get ahead of ourselves with what-ifs and possible scenarios — it simply feels too overwhelming to go there… to add more to Gwendolyn's struggles. So, we will wait and see (and hope) and then deal with whatever comes about head on.
