So alot has been going on and it just keeps adding on. Christopher had his 24 hour VEEG done on Monday morning and let me say, it was a JOY. Seriously though it was the most piss poor hospital stay/staff I have ever seen and I have seen some bad ones, especially when we lived overseas... but no, this topped it all. We get there on time and they make us sit in the lobby for about 35 minutes, then they tell us that all of the rooms are full so we will have to be in the treatment room until one opens up which should happen early afternoon. We say ok, how bad could a treatment room be... well no one told us that it was a closet... seriously it was the size of a closet with a crib shoved in there, a rocking chair and the computer for the monitor and camera. It was great!!!! So we are shoved into a little room and had some rude nurses the whole time. Christopher did good considering he doesn't like small rooms where he can't walk around. Everytime we would move we would have to take turns moving around the room because there wasn't enough room. By around 9:00 PM my parents came to see the kids since Kaitlyn was hanging out with us too, and my dad was fuming when he saw the room we were in still... so he complained to someone. A little while later the charge nurse comes in and is a snot, she asked what the problem was. We told her, to take a look around. The room was smaller than a prison cell. She said that she was told that once we were hooked up we couldn't move, but the EEG techs told us that we could move if they found a room that was bigger. I don't understand if they were that booked, why they didn't call us and reschedule, or better yet have a room saved for us since we were prescheduled. Just doesn't make sense. Christopher wouldn't calm down the whole time we were there, I asked for some Motrin for him, they told me NO!! They didn't want to page the on-call doctor. Then our neuro, well Christopher's neuro never once came in and saw us. It was Kaitlyn's first neuro that we left because of his horrible bedside manner. Then when we wake up the next morning, well when the nurses switched shifts they come in to re-hook some of the leads that came off... and fail to tell us that they want us to stay another night or two. We said no. Chris was miserable. When they took off the leads, they didn't get any of the glue out... just the leads and left him like that. He had developed sores from the glue like I thought he would, and also one cut his forehead and they just dumped Acetone on his head. He was upset to say the least. So it took 4 baths and about 3 hrs of having conditioner in his hair and combing it out to get the glue out myself. They didn't even serve him food. It was just awful.

While we were at the hospital with Chris, Kaitlyn fell asleep in my arms. When she sort of woke up she had a seizure while I was holding her. She had a kind of seizure that I had never seen her have. Her whole body had the shakes, sort of like strong shivers? Then she had another one this morning. When I asked Nic about them, or mentioned he said that she has been doing that every morning for about 2 weeks, he thought it was normal. Also, she is exhausted and says she doesn't feel well. She says her tummy hurts. Then she has been waking up early in the mornings which makes me think she is having seizures then too because she comes out and says her head hurts and tummy is sick. I don't know. I don't think the Depakote is working for her. Just sort of frustrating because you think this medicine will be the one and it's not, so you move on and think you've found it and you haven't. I know it's all trial and error but when do you get to the point where you are done trying because the meds make you feel worse than the seizures themselves. And how come no one has the same answer as far as if you aren't medicated do the small seizures do damage? Or make it so you will have more?? Or is it fine unless they last a long time?!! I just want answers. I think we are going to have to make a trip to St Louis, we are trying to put it off for as long as we can. We have money sort of now which is nice but not time on the books for Nic.

While all of this is going on with the kids, I have been going under testing every week to get approved to be a living donor for my dad to get a new liver. I am down to my last set of tests this week. Really getting nervous. It's sort of weird to think about that I would be electing to go under surgery like that. I don't know. I feel sort of pressured into doing it though so that makes it worse.

The school district has been coming every week to do things with the kids, and evaluate them both for different services they offer. Kaitlyn is going to start having play therapy to help with her aggressions that have started since the seizures started. Also I think they are going to do other things but I am not sure. Christopher is starting OT, PT, and speech because of his delays and also the possiblity of Cerebal Palsy and Autism. We'll see.

That's life. While I have been running around trying to get everyone healthy and fix everyones problems when I sit down and think... it's almost Christmas. This year I told Nic, I don't give a shit about anyone else this year. It's about our family. Mean huh? I don't think so really, I think we deserve to have a nice holiday where we share time together and exchange nice meaningful presents rather than worry about everyone else.