The days are passing by so quickly and we are so busy. My one regret is not being able to spend much time these days with Ella. Everything seems to be going well with Yvette. She and Ella have definetly bonded. Etan tells me that Keri (her PT) told him that Ella starts whining and won’t cooperate during therapy unless Yvette is in the room.
Oh, I forgot to write that we finally got a long letter from Dr. Stoler, the geneticist. She mentioned a few things that should be watched out for in Ella’s condition like rickets and skin problems in her nevus. She described Ella’s condition as linear nevus syndrome with hemimegalencephaly secondary to that. Her research and letter is very thorough — all 4 pages of it. Concerning genetics, she (as others) determined that Ella’s condition is not caused by any known gene and is a sporadic occurence. Once again, I am impressed by Mass General’s efficiency as compared with Children’s Hospital. The bad news for today is that Ella seems to have had a slight seizure, that lasted about a minute and a half. It was kind of an absence-type seizure similar to the one she had about a month ago. Even though it seemed mild, this is still scarey and must be watched.