ARG!!!! I can't wait for this part of the journey to be over with.
This ACTH certainly did the job for getting rid of the seizures but for the love of Pete, can we stop with the frickin' side effects?!!
Constant whining. Not a full out cry, but a "make this stuff stop mommy" cry.
He doesn't sleep, he doesn't laugh, he doesn't want to do his most favorite things, this medicine is robbing Daniel from us. He has lost his personality, he is cranky (and for those of you who personally know Daniel) he is NEVER cranky, he loves to laugh, and he loves doing his most favorite things, he even loves therapy. Not any more. We have seizure control, but we lost Daniel somewhere along the line.
We can get him to fall asleep in the car.....take him out and he wakes up. So we have resorted to switching and one of us sleeps in the car with him. Can I tell you how UNCOMFORTABLE that is?! We are so exhausted that Daniel's therapy sessions are getting harder and harder to get through. This coming from a child who ENJOYS his therapy sessions with Ms. Carol, Ms. Linda, Ms. Anna & Ms. Pat. Its hit or miss, he'll cry for most of it and we'll have a productive 15 minutes or its just a constant hour of the whine/cry.
I love my baby boy (he's not really a baby anymore) and I just want him happy and healthy. Where did that baby go? and why do we keep doing this to him?!!?
Tomorrow we go for an EEG (the first since starting ACTH) to see if the hypsarrhythmia (abnormal, chaotic brain wave patterns), activity is gone. Wish us luck, because I am again for the millionth time since this disgnosis started, losing controll and finding it hard to see light at the end of the tunnel. I just want some sense of "normalcy".
On top of all this..........my mom (Daniel's grandma) is sick and it makes me sad (please send prayers this way), my daughter is ready to have her baby any day now, my other daughter is away at school and I miss her, my other daughter is becoming a big girl and has purchased her first house, and then my baby girl in high school seems to be growing up without me having any say in anything....and I feel like I am missing out on so much of her life. I am not good at juggling and balancing. But I am very proud of all of them, and love them oh so much.
Just very overwhelmed with life right now. But then again.............who isn't right?