Today we took Ella to her periodic appointment with Dr. Duffy. Dr. Duffy said he was delighted to see Ella in such a stable ‘holding pattern’ and hoped we could keep it up longer. Ella has been seizure free since the last hospitalization. The price is the staggering amount of medication that she needs to take every day (three types of seizure control medicine). After the initial period of getting used to the medication and being excessively drowsy, she is now quite alert and cheerful. In fact she is extremely cheerful, making it a joy to be with her. It seems almost everything amuses her somehow. I wish I could adapt some of that attitude. We are daring to consider ourselves lucky that Ella is doing so well.
From Dr. Duffy we get the feeling that her physiology would lead him to expect much more seizure activity and less ability to control it. For the first time Dr. Duffy was talking about the operation as a certainty. Not ‘it is likely’, or any such vagueness. He was saying, when Ella is at a stage when the surgeons think it is safe to operate. We should proceed with the operation.
I don’t know. The more time goes on and Ella develops though, I find myself exceedingly scared of that operation. What will she be loosing? (they are going to remove half her brain!) The more we get to know her the more I am frightened of loosing any part of her.