Thursday, August 25th - Day 67 update

Good evening,

I always like to start out the daily updates with a review of how well Tori slept the previous night because it truly does have an impact on her day. Tori slept very, very well again last night and her dependency on sleep inducing medications seems to be diminishing. She is finally on a nice night and day sleep cycle.

All of Tori's therapists continued running various tests with her again today. Most of them are still trying to establish a baseline on Tori's current capabilities. We also learned much more from them on how a patient like Tori is experiencing her stimuli. I also feel that I need to dedicate myself to some more focused internet research on therapy techniques and measurements. Having internet access at the HSH would make this much easier of course...

Here are some examples which were given to us by the therapists:

Tori likes to maintain her arms in a protective position with her fists brought to her armpits and her forearms laying on her chest. This is exactly what a newborn child will do as well. In Tori's mind, when we try and move her from a position like this, she believes we are trying to break her arms so she is naturally very resistive and grimacing in percieved pain. Very interesting right?? This applies basically to all of the resistive physical therapy actions they are completing on her body. No wonder why she hates it...

Another one. Tori's mind is currently taking in all of the stimuli around her but she doesn't understand how to process it all. So it is best to keep the stimuli focused and at a minimum so she can begin to comprehend it, little by little. To put it in perspective an example was given to us. You know those times when everything is going on around us all at once and it seems we have no control?? The phone is ringing, the kids are screaming, someones knocking at the door, you just spilled a gallon of milk and you stubbed your toe - Tori feels this constantly!! Could you imagine how distressing that would be?!? So there are some new directives in relation to this. We are going to greatly diminish sounds and activity in her surroundings. Once a therapy session is completed, Tori will also be given a 15-30 minute break with total silence so she can absorb the results of the session. This will probably be hard to adjust to but it must be done.

The speech therapist today tested Tori's sense of taste with an orange sucker, pixi stick candy and a strawberry. Tori had a taste of each and the response was noted. She really didn't react much differently on any of them but she was somewhat agitated during that test so they are going to try it again.

We also found today that sitting Tori up almost vertically in her bed and leaving her in that position is totally relaxing to her!! She was agitated prior to doing this but once we placed her there she immediately fell asleep. It didn't look very comfortable but she did get a nice nap!! :-)

Tori has only 1 more day of antibiotics left to be given then the IV in her foot will be removed!! That will give her another degree of freedom and we will tour the HSH in her wheelchair to celebrate.

Thats it for tonight and tomorrow Tori has another full slate of therapy scheduled.

Thanks,

-Tim