We are back from our trip to Baltimore for a consultation with Dr. Freeman at Johns Hopkins. They were very professional and efficient. Gave us a feeling of being on top of things and dedicated a lot of time to the examination and dealing with our questions. The picture we got was a bit different than what we expected though. Hemispherectomies are done only in response to uncontrollable seizures, so there really isn’t any discussion of surgery for Ella at this point since her seizures are under control (mostly). When the situation ‘presents itself’; (as Dr. Freeman called it) a decision about a hemispherectomy might be taken. Dr. Freeman said that it is surprising that Ella has had relatively few seizures. The physiology of her brain would have you think she would have more. So that is a good sign. Another was the level of interactivity that she is showing in smiling, laughing and responding. Dr. Freeman’s examination was different than most of the neurologists who saw her till now. For one, he only bumped and measured her a bit. He then proceeded to google and coo with her, interacting with her, making her laugh and look about. The other piece of good news we heard there was that children in Ella’s condition start compensating and having functions from the abnormal side of the brain being assumed by the normal side of the brain, from birth. They don’t have to wait for a hemispherectomy for that process to start taking place. So by the time a hemispherectomy is done, usually, much of the functionality has already migrated. The less than good news (marketing term for bad) is that her condition is a complex one, not one easily defined as mere hemimegalencephaly, since she has more accompanying symptoms such as the hemihypertrophy and linear nevus about which even less is known about than hemimegalencephaly. The trip itself was a lot of fun. We got to see a bit of Baltimore, and also to stop and say hi to Danny, Tammy and Yonatan in New York.
Ella was in amazingly good spirits throughout the trip, constantly making noises, looking about and being generally amused. It is strange how much cuter she is than other babies. I find all others quite boring, yet I can watch Ella for hours. Also when other babies laugh or smile, it is just a mundane non-event. When Ella does, it has the power of changing your mood.
Maybe they are just too symmetrical.