Sunday update

I haven't posted for a few days, but I think it's because I have a whole string of emotions. I'm not sure how I'm doing or Jaden for that matter from hour to hour. One hour it seems like an easy trial like it's just life. Then the next hour I want to cry and I'm not sure how I can continue to deal with all of this. Sometimes I feel sorry for Jaden and sometimes I feel sorry for myself and then sometimes I feel sorry for my other 5 kids that I've hardly spoken to for the last 2 weeks. I feel so bad that I'm not home with them and yet Jaden is more than I can handle right now and I know it's so important to get the treatment she needs. So I guess with all of that being said, this is the update. Jaden was released from the hospital on Friday. They said they could keep her longer if I wanted, but since I was a seasoned Mom of epilepsy that if I wanted I could take her to my parents. They want me to stick around Utah for the next 2 weeks for follow up appointments to make sure she is stable enough to return to Alaska. This means that I will have left my family on April 2 and will return on May 3rd. I guess in a way it makes me feel somewhat angry. Sometimes, I feel like I'm failing the spiritual side of this trial, but then again in an hour I might feel more positive. Okay back to the update. Jaden has had only 4 seizures a day for the last 2 days. You would think that it would be something to jump for joy over only her behavior is out of control. I literally mean out of control. She has to be held every waking moment. You HAVE to hold her. If you don't she goes on a destruction path. Within 5 seconds of letting go of her she will find something to pick up and throw. She will take her hands and clear a whole shelf. She will run to the bag of dog food and grab two handfuls of food and throw it. She did the same thing with a bag of wheat my mom had in the kitchen. If you let her feed herself she will throw her food. She will dump it upside down. She will even dump her drink. It's insane. So you might be asking WHY????? Well, the neurologist told me that she has the worst case scenario for childhood seizures because they are frontal lobe seizures. The reason they are the worst kind is because the frontal lobe controls your personality, your thinking skills, your impulses, your decision making, all of that. He said that in the 24 hour EEG monitoring that he did, he found no normal brain activity in her frontal lobe. In between her seizures she has "disruptions" in activity. He said because of this it doesn't surprise him that she has this kind of behavior. He said in fact it is really common for kids with frontal lobe seizures to have behavior problems. So I asked him what could be done. He said that the only hope is that as the medication eliminates the seizure activity that hopefully it will return all of the brain activity in the frontal lobe back to normal. He said it does for some and others it doesn't. Oh, if your like me you're wondering if she had brain damage from all of these seizures. Well, you'd think, but he said her MRI was totally normal and that her brain looked great. Another thing I might mention is that despite all of the horrible behavior she is as sweet as can be. She tells everyone she loves them. She says thank you for everything. She has such a sweet countenance. In fact she does all of this with a smile on her face. It's sooooooooooooo frustrating!!

Well, hopefully this helps you understand my frustration. Tomorrow I'm taking her back to Salt Lake to Primary Children's. She has an appointment at 1:00 there. After that appointment she has an appointment with an energy specialist for a cranial sacral massage. (I'm know I'm probably spelling that wrong. I've never seen it written out, I've only heard it said). Anyway, I'm not sure what to expect from that, but I've heard it does wonders working with the energy channels in that way. Of course, I'm also getting kind of discouraged thinking that each thing is going to help and then it doesn't.

Okay, I'm going to quit. I've been so negative tonight.