The latest endeavor

I will try to keep this on the shorter side. It's been a highly emotional week for me and I just don't feel like revisiting  the depth of all that emotion at the moment. I just have too much to catch up on to be sidelined by it again.

Kaydee's behavior is deteriorating. She's become quite mean to me and there's not much I can do to stop it. Most days, all I have to do is open my mouth to set her off and any intervention on my part just escalates the situation. It's wearing me down, so sometimes I do just let her go and try to remove myself from it. She a darn stubborn little thing.

The medication doesn't seem to be working like we want. She's having more and more seizures, and I know that all that activity in her brain has to be overwhelming her and her way of reacting is to lash out at me. One of the things she frequently tells me is that she hates me. The other kids had said it from time to time and I know they are just hurt and don't mean it, so I've never taken it to heart. I think that frustrated the other kids because it was not having the effect on me they were looking for. They quickly abandoned that tactic. So I am not hurt when Kaydee says it, and I certainly don't believe it. I have steeled myself against her verbal assaults, but sometimes they wear me down. It's no fun fighting with a 7 year old. It's no fun watching your baby suffer. It's no fun playing this whole stupid game. It's not fair.

I don't want to call the doctor again. I don't want to play the medication game. My child is not a guinea pig.  So after some research on Sal's part, we have decided to try neurofeedback. The only drawback is that insurance will not cover it. But we are committed to it, so we are trying to do what we can to make this happen. After meeting with the doctor yesterday, my expectations are a little more realistic, but even then, the outcome will be way better than our reality now. He told us of a girl very much like Kaydee that was having 12 absentia seizures every 15 minutes. after a course of treatment, she is not completely cured, but the seizures have been reduced to 4 an hour. Her quality of life has greatly improved. While Kaydee doesn't have that many seizures, it is affecting her quality of life, and has an effect on the rest of the family.

I already feel like I just about live in the van, but once treatment starts, it will be twice weekly trips up to University Hospital, 25 miles away. I've started listening to books on CD, so I'm just going to have to find a whole bunch more.

We've started a fundraising website to help with the costs. http://www.gofundme.com/Helping-Kaydee  Between weathering Kaydee's outburst and the donations and kind words from friends, I've been quite overwhelmed these past few days. I cry at the drop of a pin. I'd better take a box of tissues with me to the ward Christmas party tomorrow because there are just a lot of dang awesome people there.