Hi Everyone!
We are safely at the hospital in Ft Worth. The drive was uneventful and we found some great books at the bookstore we stopped at before going to the hospital (Jess was in need of books to help her through the hospital stay, of course!).
They did the 24 hr EEG starting yesterday afternoon but we have not gotten results yet. The pain people were here and did a full assessment. The doctor will be working with the neuro doctor to try to figure this out. A psycho physiologist was in for an hour or so and will be back tomorrow to help Jess with biofeedback and meditation etc... He is great.
I am not staying at Ronald McDonald House. Jessie's room is HUGE for a hospital room. It has a nice recliner and a couch that the back cushions come off and it becomes a nice twin bed. I didn't even take all the back cushions off last night.
Jess is off ALL medications until tomorrow when the doctor wants to start all new. A short medication wash and then he will start from scratch. The biofeedback guy thinks he can get our insurance to provide some home biofeedback equipment, even just a computer program and electrodes, something to help her with it at home. He is also going to teach her self hypnosis tomorrow.
So far we LIKE the docs, nurses, therapists and everyone. They are super nice, very child friendly and they "get it". The pain nurses really understood that when Jess is not shaking it is because she is concentrating on not shaking, that it hurts to suppress it fully, and that she cannot fully concentrate on things if a substantial part of her attention is focused on not shaking and the pain. That is WAY more than the pain people in OK ever did.
I am holding up better than expected. Hurting a LOT, but coping. I cannot walk much at a time but did manage to go down to the cafeteria and then out to the car to get my clothes and the rest of our things. I had to take a wheelchair to lean on and I put the stuff on it to get it back. I am pretty much done with walking tonight - my back, knees and left calf are hurting like crazy. Not sure why the calf, it is a new thing, but oh well.
I will read what I can and will update as I can here. They not only have wi-fi, the tv here has movies, video games including Ms. Pacman and Joust (favorites of mine, lol!), and internet access with a net nanny!
Hugs to all!!
We are safely at the hospital in Ft Worth. The drive was uneventful and we found some great books at the bookstore we stopped at before going to the hospital (Jess was in need of books to help her through the hospital stay, of course!).
They did the 24 hr EEG starting yesterday afternoon but we have not gotten results yet. The pain people were here and did a full assessment. The doctor will be working with the neuro doctor to try to figure this out. A psycho physiologist was in for an hour or so and will be back tomorrow to help Jess with biofeedback and meditation etc... He is great.
I am not staying at Ronald McDonald House. Jessie's room is HUGE for a hospital room. It has a nice recliner and a couch that the back cushions come off and it becomes a nice twin bed. I didn't even take all the back cushions off last night.
Jess is off ALL medications until tomorrow when the doctor wants to start all new. A short medication wash and then he will start from scratch. The biofeedback guy thinks he can get our insurance to provide some home biofeedback equipment, even just a computer program and electrodes, something to help her with it at home. He is also going to teach her self hypnosis tomorrow.
So far we LIKE the docs, nurses, therapists and everyone. They are super nice, very child friendly and they "get it". The pain nurses really understood that when Jess is not shaking it is because she is concentrating on not shaking, that it hurts to suppress it fully, and that she cannot fully concentrate on things if a substantial part of her attention is focused on not shaking and the pain. That is WAY more than the pain people in OK ever did.
I am holding up better than expected. Hurting a LOT, but coping. I cannot walk much at a time but did manage to go down to the cafeteria and then out to the car to get my clothes and the rest of our things. I had to take a wheelchair to lean on and I put the stuff on it to get it back. I am pretty much done with walking tonight - my back, knees and left calf are hurting like crazy. Not sure why the calf, it is a new thing, but oh well.
I will read what I can and will update as I can here. They not only have wi-fi, the tv here has movies, video games including Ms. Pacman and Joust (favorites of mine, lol!), and internet access with a net nanny!
Hugs to all!!