Earlier this year Reagan’s case was presented at a conference by her Epileptologist to other Neurologists, Radiologists, and Neurosurgeons. As it turns out, everyone was very interested in Reagan’s case. As Blake put it, “doctors treat diseases, neurologists admire them.” From this conference a new theory emerged, and we quickly started scheduling more tests in the … [Read more…]
Last week, Reagan had her first PET scan. Her Epileptologist feels that there is a potential for her seizures to be focal seizures with secondary generalization. Translation: Her EEG’s have always shown generalized seizures where her whole brain lights up, like heat lightning. However, while they are super consistent in their pattern everytime, they are atypical … [Read more…]
December 13, 2016 – Follow-up MRI and meeting with the Neuro-oncologist It seems that it has been over a year since we had received any good medical news. The typically optimistic people that we were at our core were slowly being replaced by more pessimistic, on edge, waiting for the next shoe to drop, type … [Read more…]
Schrodinger’s Cat – simultaneously alive and dead. Reagan’s beast – simultaneously doing nothing and growing. Simultaneously it is everything and nothing. We won’t know until tomorrow, when we peak at the beast for the second time. Tomorrow when, by us looking at the beast, we have sealed its fate as either doing nothing or growing. … [Read more…]
September 14, 2016 changed our lives more than we could have ever imagined. We had checked into Children’s Hospital to do a routine MRI (our first at Children’s) and another EMU Study. We were fortunate that they were able to hook up Reagan’s electrodes while she was still under from the MRI, which cut down … [Read more…]