The conversation started off good. Ruth (she coordinates every aspect of the surgery and even attends the conferences) said that they all loved the video I sent...especially the part where Sophie was making the tick-tock noise for the clock flashcard. She said they all thought she was just an adorable little girl and was very impressed with her development.
Then she dropped the bad news.
She said that there were about 25 doctors that attended and they had a very long discussion regarding Sophie. They pulled the actual EEG recording and tried to pinpoint exactly where the seizures were originating. The PET scan and MRI were just not enough evidence. The bilateral seizures originating on the EEG was too overwhelming. The video I sent, which I originally thought was going to make her case stronger, had the opposite effect. They were so impressed with her development that they did not want to do anything at this time to have a negative impact on that. Since Sophie appears to show absolutely no preference on using her left or right side of the body, it is quite possible that she is using both her left and right side of the brain...so they do not want to interfere with that.
They want us to come back in six months to do more testing...another 24 hour video EEG, another FDG PET scan and a FMZ PET scan. They say it is quite possible her seizures will lateralize (meaning that the seizures will originate from only one side of the brain). I am suppose to keep them updated once a month as to Sophie's seizure status along with her development. I am also suppose to make note if I start seeing her have one-sided seizures and if she starts preferring one side of her body over the other. In the meantime, I am also going to get her a neuropsych evaluation to help determine if she does have a left or right side preference.
I had come to terms with surgery. I truly believed that this was it. That this was the end to Sophie's persistent daily seizures. That she wasn't going to wake up in the middle of the night anymore...screaming and upset because of the seizures. That we were going to see leaps and bounds in her development. That she could quite possibly be...a typical little girl. I dare dreamed of a life without numerous doctor visits, numerous tests, numerous medications, numerous seizures, numerous tears that roll down her face that is not due to typical reasons a little girl might cry. I know this is all still quite a possibility. But I also know that this might not be the path that God has laid out before her and that I must accept that...as hard as that may be. That He may have other...greater...things planned for her. But for now...my heart is broken. But I will put it back together and move on with the wonderful life that I do have. I am so thankful and grateful for the happiness in my life. Sophie is truly happy. She is a wonderful, beautiful, precious little girl who continues to amaze me.