So, the update. Little Inara is seizing again. We are at the point where increasing her medicines carries some not insignificant risks (specifically, to her kidneys). Before making that judgment call, we and her doctors need to be certain what is happening with her body and brain and what’s needed. The standard EEG didn’t capture what we needed to know, so our next step is to schedule a hospital stay of up to five days; she’ll be wired up with electrodes and videotaped 24/7 to catch and confirm exactly what’s happening, if we can.
Then, better informed, we can look at our options. Increase Medicine A? Increase Medicine B? Look into medical marijuana? Some combination of the above? What’s frustrating is that we don’t know what’s causing her seizures, her blindness, or her developmental delay; all our tests (so far) for genetic disorders have come back negative.
All I know is that I am her father and it falls to me to protect her, and I don’t seem to be doing that. In my head, I know that I am doing all I can. But that isn’t good enough. This is my little girl. I want her safe. She is happy and also feisty and brave. I want her safe.