EMU stay at Boystown

Today we checked into Boystown for an extended stay EEG monitoring. We've been trying to work with Jayen hoping that he will allow the technicians to put the leads on his head with little resistance. We watched videos of other kids having the procedure, we practiced using q-tips and washing off spots on his head, we talked and practiced. 
After checking in and getting settled into the room, it was time to see if we prepared enough. I talked to the nurses and staff and shared with them the verbiage we've been using. We talked with Jayen again and even let him practice putting leads on the head of a boy printout. They bribed him with iPad time and snacks when he was finished. And guess what?!?! That kid sat on the couch and barely fussed as they marked his head and washed it with the q-tips. I was so proud of him! 
After cleaning his head, the next step was to lay on the bed to put the leads on the cleaned marks and glue them in place. I don't understand why, but the transition to the bed seemed to trigger him. Jayen was not cooperating and refused to let the technicians put the leads on his head. Which lead to mom having to sit on him to restrain his hands and feet and hold his flailing head in my hands as he screams out in fear. This is the part that kills me. I know why I had to do it. I urged the nurses to let me do it. But a part of me dies each and every time. My heart breaks when I have to look into his eyes and hold him against his will. For over 45 minutes I had to sit on him and try to reason with his fight or flight response. I had to watch the tears roll down his face while forcing him to stay where he is most uncomfortable. 
We eventually got all the leads on and I knew it was for his best. I pray that this test brings us some answers and hopefully some better options. 
Because of the COVID-19 virus we are not allowed to have visitors so this will be quite a boring and long stay. Send some prayers for us and the staff here. We are praying they get all the information they need as quickly as possible. 

Black and blue

This is what Jayen's face looks like. This is what the seizures leave him with. The bruising around his nose, the black eyes, the crusted blood in his nostrils. These don't ever seem to go away. They sometimes change shape or position but are almost always present.

The headband I bought last week seems to be helping, if we get it on him in time. We are watching over him from the second he wakes not leaving his side. But somehow they strike the split second we blink. I continue to pray that some day we will have a little more control over them. For now I just pray that they stop leaving these lasting impressions on my son.