Tired of treading water

Last week was a long and emotionally draining week. The kind of week that ages you; turns you gray.

The results of the EEG came in. It showed no sign of epilepsy. Which was a disapointment...if only because we want an answer and direction on how to improve her life experience. A diagnosis of epilepsy isnt a good one.... so our attentions went back to axiously waiting to get the heart monitoring results back. Which I was certain would show us what the issue was. But it didnt. As many events as she had while on it.. and it didnt register a thing. WtF man.

We then learned that EEGs are only 50% accurate. Then why the fuck run it?! To further rule out Epilipsy and to further rule out a heart issue her dr has requested a Cat Scan and an Echocardiogram. We have heard back from cardiology... her appointment is in April. We have not heard yet from neurology. I have calls to make.

In the meantime, I watch as Willow despairs at the limitations of her condition. Her convulsions are happening daily. Bigger events seem to happen in moments of joy or physical activity. When her heart rate rises. Ruling out heart and neurological reasons there is a third possibility. It has to do with her body having an extreme reation to emotional stimuli. Its a thing. PNES are attacks that may look like epileptic seizures but are not epileptic and instead are cause by psychological factors. Sometimes a specific traumatic event can be identified. But not always. And in this case none of us has a fucking clue what could have effected her so dramatically. The only time I dont have a bead on her is when she went to a shady daycare as an infant in Phoenix. It was shut down suddenly not long after she started there. We never learned why other than there were violations. Anyway, PNES are sometimes referred to as psychogenic events, psychological events, or nonepileptic seizures (NES).

If thats the case.. her dr is hopeful... then its quite easily treatable with therapy that involves both neurology and psychology.

Regardless of the cause, its been emotionally exhausting. Add to it the physical fatique the accompanies the seizures and the fear of not knowing what is wrong... shes a mess.

I will close with a picture of Misty perched on a chair.