April 16, 2011

While Benjamin continues to have seizures, he was discharged late yesterday afternoon. The official EEG results were devastating. Ryan was working so I was the only one in the room when his doctor came in at the end of the day to discuss them with me. I was told that between seizures, Benjamin's "background activity" is extremely disorganized with no recognizable pattern. What's most concerning is that the "disorganization" has evolved from his last EEG which was about 2 weeks ago. Right now they're diagnosing him as having general epilepsy, but his primary neuro doctor is worried that he may develop a condition called hypsarrhythmia. I asked her what this meant, and she said the seizures will most likely escalate. She said Benjamin will always need to be on a moderate to heavy dose of multiple seizure meds. She said the goal is for him not to be so medicated that he's "not Benjamin anymore." I had him sleeping so peacefully in my arms and I just looked at him and broke down. I told her that I know he's not going to be perfect, but I want him to have a good quality of life. Ryan arrived shortly after (in time for the next round of neuro doctors to come in) and got the same story. I started crying again and all I could say to them was "hasn't this poor little boy been through enough?" I really thought having gone through what we went through a year ago, I would get used to these bombshells being dropped on us, but I'm not. Maybe I've been living in denial for a bit. Who knows. But all of a sudden this is very real and unbelievably scary. Ryan and I are finding ourselves asking the same questions we asked a year ago... Why is this happening to us? Why can't Benjamin catch a break?