Day Five - Endless Video EEG

The focus is now on making sure that we capture a full seizure on the video EEG and to study it when it happens.  The neurology team is reducing Byron's medicine and letting him stay up until midnight every night to force the issue.  Which has made me very very tired.

Bob is here for the weekend shift,  and if need be I will return on Monday.  The way things look now they are fairly sure he will have a seizure before Wednesday.  It seems utterly barbaric to put him through this but I am assured this is what needs to happen to know the best way to treat this very difficult form of Epilepsy.

ESES - Electrical Status Epilepticus in Sleep is the official diagnosis as of right now.  This form of Epilepsy can be very hard to control so they really need lots of data.

And as always Byron is doing great.  He likes staying up late but he is a little loopy.  Byron's school mates sent a get well soon slide show.  It is so sweet.  Because their names and pictures are in it I won't put it here but it was so touching and heartwarming.  Byron loved it!

He had a visit today from the sweetest therapy dog who looks just like our dog Daisy!

And Santa finally came in person for a real visit.  He brought Rudolph, an Elf, gifts of Legos and took a selfie with Byron.