Wednesday, August 3rd - Day 45 Update

Tori started today on a very good note by almost sleeping the entire Tuesday night!! She was given her Zanaflex at 11:00pm Tuesday night from which she slept until 2:00am when she had a coughing episode. We gave her a single dose of Valium at that point then she slept all the way until about 7:30am!! And of course I did as well :-) I'm really liking the Zanaflex at this point but I hope Tori doesn't grow another immunity to it...

The action really began at 9:00am or so when Tori had a bowel movement!! I know some day Tori will read this and come after me but this is important as it shows her digestive system is beginning to operate correctly again. We did have to halt her feeds temporarily again this afternoon because her stomach had some fluid build up which wasn't clearing as fast as we would like. Her stomach contents will be checked again later tonight and if its an acceptable level the feeds will begin again. All of Tori's cultures are still negative so that is great news as well.

Tori was in a very good disposition today with little agitation so we decided with the physical therapists to sit her up in the bed and place her feet on the floor. It went very, very well as Tori attempted to use her muscles to balance herself. She wasn't very successful at it but she was at least making the effort. Practice, practice, practice. She did better when they released her head and she attempted to hold it up. Up and down it went for a minute or so until she became tired. Her arms also seem to relax much better in the seated position probably because they are more difficult to lift all the way to her shoulders. We will now be doing this position much more frequently moving forward.

Tori's primary physical therapy doctors came in next and we decided at that point to get Tori some more Botox!! I got to help them shoot it into her troublesome right bicep and forearm which are always clenched, into her left bicep as well though not early as much as her right, into her right side neck muscles because Tori prefers turning her head to the left and finally her lower back which arches during each one of her twitches. We used the EMG again to position the Botox accurately. Again, the doctors can't seem to agree on the twitches and they are either Clonus related or Dystonia. It was also suggested they could be a form of seizures as well... The EEG is now scheduled for Friday and it will tell us alot as to what the twitches actually are. The EEG equipment will be left on Tori basically all day and we will be providing alot of stimulus during this process as well. The Botox shots did NOT affect her nearly as badly as her legs did a while ago. In fact we prepared for the worst and tried to drug her to sleep immediately after the shots with Valium, Zanaflex and Hydromorphone. They didn't even touch her... But the good news was that she wasn't really agitated or in pain at all. In fact she was more awake and active afterward than we have seen in a long time. Eyes wide open and tracking again, very little agitation, responsive to sounds and sights - it was all pretty good. She stayed like this almost all day until 9:30pm or so when she became really tired and agitated. We ended up giving her Valium and Zanaflex and this time she is out!! She was basically up ALL day so we are hoping for a good night of sleep but in the back of our minds we remember our last Botox episode... Maria, Whitney and I are all spending the night in Tori's room to keep a close watch on her.

In two or three days we should see some great Botox results on Tori. We are all hoping and praying that the greatly reduced stress on her muscles will ease and lower her agitation levels. We shall see.

Thats it for today. All in all a good day except for the temporarily stopped feeds. I think we can call today the third day of three positive days in a row :-)

Thank you all so much!!

The Schmanski's