Eight days to go and I wake up to Ryan showing signs of medication side effects and myoclonic jerks. It has been 15 days since his last major seizure. That we know of at least.
Sometimes Ryan has days where he “feels off” or has dizziness or a bad headache. Are these seizures? Maybe. Or maybe they are signs of a seizure to come. There is also the possibility that he had an absence seizure without anyone realizing it and these are the after effects.
It’s difficult to say and even more difficult to watch. All I know is that the medications aren’t doing the trick. The doctors have ruled out autoimmune and genetic epilepsy. So all that is left is this surgery.
At least the first part of the surgery. The first part is a stereo EEG that will require putting electrodes directly on Ryan’s brain and then a week or so of monitoring to see where exactly the seizures are coming from and maybe what’s causing them. Then the doctors can decide what type of surgery, if any, Ryan needs. That’s where the second part of the surgery.
The waiting and countdown is stressful for us as a family. Now there is the possibility that the surgery will be postponed. While I understand why it could be postponed I just want to see Ryan better and neither of us waking up to him having jerks or seizures any more.