They took him off pentibarital drip to give his brain a rest at 3:00 am. His eeg is showing small spikes of brain activity. They say some of the spikes are still showing seizures. They raised his Onfi to 7.5 ml twice a day.We talked about the Epidiolex. They said we would have to talk about this at his neurology appointment on November 13. Please continue to pray for Superman. Thanks for all the prayers and positive thoughts. 💜
💜The MRI showed nothing remarkable. The cspine exray showed nothing as well. I am thinking it is just the epilepsy kicking his butt right. But, I know my Superman is warrior and he will fight this and win!! I will update again later. I want thank everyone for the prayers and positive thoughts. Please continue to pray for Superman. 💜
For anyone who thinks epilepsy is a joke. This is proof that it is not a joke. Superman needs prayers right now. So please continue to pray for him.
He did not have good night. He seized all night in his sleep. He is so many different medications right now. Hopefully they start to work on him. So they don’t have to put him on a ventilator.
My baby is not having a good day. The seizures are back to back to back again!
He has infection going on somewhere just don’t from where yet. 102.00 fever overnight again. Blood pressure still low. His seizures are under control though.
Superman had a 4-hour EEG Friday. It was fun trying to keep him from pulling the electrodes off his head. We will have the results in 2 to 3 weeks. He also started a new medication on Sunday. The medication is called Onfi. So far the side effects have been mild.
Superman was at a neurology appointment while taking the pictures. He is getting better at looking at the camera.
We had a surprise party for Jeff it was his 50th Birthday. He received a few joke gifts. One was a cane filled with different things on Superman posed with the glasses from the cane.
thetruesuperman 