Saturday, September 24th - Day 97 Update

Hello again,

Tori was very tired for Maria Friday night and they both actually did get some good sleeping in. The troubling symptoms observed in previous nights were non existent. Tori's dehydration appears to be almost gone and we discontinued giving her any more water through her IV this afternoon. Now we are giving her 100 milliliters of water per hour through her J-Tube plus 30% of Tori's daily bilious output. Now if we can just stay on top of this and keep her hydrated at all times... The double calorie Jevity is still being used as well and I haven't reported Tori's weight yet because I don't believe their scales work very well here... The first time we weighed her the result was 81lbs and I KNOW that isn't correct!! The last time we tried 91lbs was reported and we don't believe it is correct either. We can visibly see she is heavier than the 94lb weight reported at PCMC. I'll now ask for a different scale or at least a calibration on the one in the unit.

The OT and PT team spent about 1.5 hours total with Tori today since it is Saturday and Tori only gets half of her therapies and NO speech therapy. Tori spent some more time in her wheelchair today and afterward she pretty much just rested and relaxed the remainder of the afternoon.

Tori is still experiencing some additional myoclonus or even 'flopping' when you attempt to reposition or move her. We raised Tori's Keppra back to the original 800 milligrams but it might take a couple days to catch up in her system. If the symptoms remain we will have to look at some of the new medications we are giving her. Tori also had a seizure today when we were changing her. It lasted about 10 seconds but her whole body was trembling and her eyes were rapidly moving from side to side. Another behavior we will have to watch for very closely... effect's on Tori.

We have kept Tori's button trach plugged for most of the day and I will keep it plugged tonight as well. We did here differently pitched 'hums' and sounds today. She is actually watching and humming at me while I am typing this update and that is definitely something new. We all pray and hope that words will be following those sounds sometime in the future.

Thanks again everyone!!

-Tim