This week Grace gets the prolonged EEG I’ve been requesting for a couple years. This is how is goes down: she hangs out in a hospital bed for a whole week (fun) with a camera fixed on her and wires on her head. So it not only records her brain activity, but also video of the episodes to give a more full picture of what these episodes really are.

It’s called video telemetry (not telepathy…no mind reading involved).

It’s not uncommon in Rett syndrome for there to be a misdiagnosis of seizures which are actually something else. With the risks of being on anticonvulsant meds for a lifetime (like kidney stones…ouch) we don’t want her on these meds needlessly on the off chance it’s not seizures. And if they are (I’m pretty sure they are), then I want to know exactly what kind they are and what’s happening in her brain when this happens. I believe that knowledge is power and I want us to have as full a picture of Grace as we can.

We’ve got our own room, movies, a cooler full of food and 4g connection. #sorted