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. 💜
They have in a sedative coma to keep the seizures under control. They also told me it is to give his brain a rest. Remember he came to hospital in sub clinical status. The plan for today he may have an MRI not sure about that yet. I will let everyone know more later. Thanks for all the prayers and positive vibes.💜💜
Superman has to be put on a ventilator to help him breathe now. He is having hard time breathing because of the seizures medications he has been given to control them. They are placing a central line and al line for needed medication.
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.
So his sister came home with Dunkin Donuts coffee the other day and Superman always attacks her for it. He loves his coffee. This is the result of him drinking coffee.
The surgery went well. By the time got to go back to recovery my little Superman was awake. He was ready to go home after he drank his apple juice. Now time to go home and rest.
Dylan got the superman hat for Christmas and he got the new Maraca. It is hard to buy stuff for Dylan because he has different needs then most children his age. He likes to spin stuff, like the old house phone he loves play with.
The bus is coming to the house tomorrow to train me on how to put Dylan on the bus. I don’t think I have a problem putting him on the bus. I have a problem with the bus aids who just stand there and do nothing. They should already be trained to handle special needs children since they are working on a bus that transports special needs children.
The bath part is easy with him, it’s afterwards that is the problem. When his bath is over he just wants to lay in the tub and do nothing. So, I have to struggle to get him out. Then we go in the room to get him dressed and thats when the fun begins. He does not like to cooperate with you at all. By the time I’m done getting him dressed I’m soaking wet with sweat. Not mention he has been home sick all week, with this cold that has been going around. So, I’m one tired mommy this week. I told him he has to go back tomorrow and I don’t think he liked the idea to much. I have to catch up on my school work too. I love you Dylan my Superman!❤
thetruesuperman 