Getting Good at Waiting

Seth and I arrived at Children's yesterday and have been somewhat patiently waiting for a seizure. It's so ironic that they come at the most unexpected times at home, and then when we're here, ready and waiting, we continue to wait.

 Getting the electrodes connected for the EEG

Working on a sticker book while we wait for a seizure

Seth still wasn't feeling well yesterday and had an elevated temp again last evening. Due to potential viral illness, he is on contact precautions, which means that any staff entering the room must wear a gown, gloves and mask. His temp has been normal today, so hopefully contact precautions will be lifted in the morning. Seth has been completely off one medication since Sunday, and we are continuing to taper his second med as well. Additionally, we did sleep deprivation last night and will continue until he has a seizure. We are also trying exercise to help induce a seizure, so Seth is using a recumbent bike periodically throughout the day. 

I'm not sure this is exactly what they had in mind...

Tomorrow Seth's Dad comes to stay with him, and I will go home to be with our other two sons. It's not ideal to have to leave mid-week, but necessary. Still hopeful that we will have some seizure activity before I leave, but it's looking more like the SPECT won't be completed until Thursday. Fingers crossed that we can make it happen!