Monday and Tuesday, September 11th and 12th

Hello all,

I'll start by stating again that it sure is nice having Grandpa and Grandma Schmanski home again!! I know all of our other relatives in the Minnesota region miss them but we sure enjoy having them back because they help us all so much. Caring for Tori and trying to get everyday chores and activities done is quite the challenge and the more assistance that is available the better!!

The highlight of tonight's update is Tori's progress and general success using the EagleEyes (EE) solution. Monday's experiment with Meredyth and Christi went quite well and Tori has much, much more control of the mouse using the electrodes on her head and face instead of the camera mouse. The electrodes measure the angle of her eyeballs to move the mouse so her head can remain still. You can also set it for head movement as well but Tori seems better suited for eye movement only right now. Here and here are a couple of pictures of Tori with the probes attached. When I first installed the EagleEyes software and plugged the control box in it wasn't working... So I tore the box apart and found that the switch was faulty. So after some switch twisting and repositioning I was able to make the power finally turn on.

Once Tori was all connected we placed the computer in front of her and adjusted the control box for Tori so that the mouse was steady and the range of motion on the screen was correct. It does take some trial and error to get this right. Then we started the EE aliens application and watched Tori try and move the 'sight' on top of a green alien on the screen. The alien stays put for about 7-10 seconds before moving to another position on the screen. Once Tori gets the sight or basically the mouse on the alien an explosion occurs and the computer sound goes 'boom!!'. We instructed Tori to put the sight on the aliens and she started slowly getting 1 or 2 out of 10 but I was also adjusting the control box during this time. After 10 minutes or so Tori achieved her high score of 7 out of 10!! We'll shoot for even better scores next time. She became disinterested in the EE aliens game after about 15 minutes so we switched over the EE paint application.

The EE paint application basically prints a spectrum of color trail behind the mouse as it is moved around the screen. So Tori can visibly see the results of her mouse movement. Tori started fast on this one and moved the mouse back and forth horizontally across the screen to our fingers placed on each edge. She was also able to move it up and down quite easily. She painted several pictures and here is a look at one of them. Towards the end of the experiment Tori was keeping the mouse in the center section of the screen and was moving it around in semi circles. She was paying good attention to what she was doing.

We then tried the new Clicker 5 software I installed which has 'grids' or exercises that Tori can do. Simple things first like pick the correct color, letter or number or select a type of object. Tori had already been going a good hour when we started and she was done at that point and didn't want to participate. Getting Tori to focus on something for an hour is something though given her previous attention spans. So we are definitely onto something and we will be trying again in a team setting this Friday. I will work with her in the meantime and hopefully Tori will gain even more consistency in using the solution so we can eventually test her cognitive ability. I also need to build or get some customized grids or exercises for her. With day one using the EE solution complete we are very encouraged!!

Demeanor and behavior wise Tori has been doing well again. We are now at the 500mg or depakote 4 times per day dosage and intend to stay there for at least a week for observation. Tori rarely has myoclonic tremors now and if we can stay at this level we will have reduced her depakote from 6000mg per day to 2000mg per day. Tori will have a blood sample taken later this week to see where the valproic acids levels are in her body.

Tori is also still snacking as much as she can!! Again, she is trying basically anything we are eating in very small amounts though. You do have to monitor her though and make sure she is in an eating mood and chewing and swallowing consistently.

Alright, hopefully we will continue to have more and more good news to report with each passing day.

Thank you all,
-Tim