Well Cully had a rough night. After he woke in the middle of the night as he usually does his mum went in and slept with him. A while later I heard Cully yelling and kicking the door and the wall and throwing toys. When I went in I found him very upset and he even hit his mommy. A real hit too. I spoke to him, told him to relax. Took his stuffed animals and laid them in his bed and covered them up with blankets. Looking at Cully and explaining that it was night night time and we need to get his babies to bed and him too. I got a thumbs up and he crawled into bed and got tucked in. Mum and he slept the night away.
Mum and I think he was not awake until shortly after I went in the room as his behavior was unlike Cully even when he is truly upset. Cully has began to have terror attacks occasionally and I think these are due to his medication and last night is just another part of the journey.
After Cullys little event I was unable to sleep the rest of the night so I went to the office and wrote his doctor an email asking if there was any chance we could take Cully off the Vigabatrin which is the high risk drug he has been on for some time now. That letter went out at 4:30 am and it was not long before the wonderful doctor replied to me with the explanation of why we can not stop the medication at this time. I have a lot of faith in Dr Chugani and will follow his recommendations.
Cully has been having hard seizures today. Multiple clusters with no pattern. All you can do is watch and wait for them to stop. My intentions today were to take off to the cabin for the night with just Sawyer so he and I could have a chance to do father and son stuff with no distractions for 24 hours. Just not a good time to leave with mum under so much pressure and Cully not having a good day.
On another note Cully is still using words and even came to me this evening to let me know he had to go potty. This is a very good thing. I have had every conversation today with him begin with a please, answer with an OK, or end with a thank you. Again, this is not what we are suposed to be seeing with the IS.
Cully, mum needs a break and I don't know how to give it to her so for the next couple days everything will go great OK?
Sorry you're going through all this stuff. We have had a similar night and day.
ReplyDeleteI hope things are going better for you. I think we should have T-shirts that brag of our accomplishments, like these sort of days and nights....
ReplyDelete