Tuesday through Sunday, March 14th through 18th
It has been another hectic week and here is another delayed update because of it. It has been very challenging lately as work is extremely busy and demanding and I am spending much of my time just trying to keep up with it all. Of course I could also spend every single day solely dealing with all of Tori's insurance, home care, health care and lawyer issues... It all just seems so overwhelming and never ending at times... But, we just have to take it day by day and try to get as much accomplished as we possibly can though I don't think we can ever be 'ahead'.
Tori's muscle tone is about as high or tight as it has ever been and unfortunately it continues to make her miserable... We have her on steady doses of zanaflex to relax her muscles and xanax to calm her agitation. We rescheduled her botox and phenol injections for March 29th so we are going to have tough it out for another week and a half. I guess I should say that Tori will have to tough it out for that time... Her right arm is so tight that when she scraped it across her stomach she actually pulled her GJ-Tube out of her stomach... It came out about two inches but it was probably still place able. So I gave her some medication to calm her and when I came back to see if it had taken effect she had pulled the while thing out. So I put in the new G-Tube we had as a backup and so far she has left it alone. Her arms are also bruised up from striking the rails on her bed. No matter how many pillows we stuff around her she always finds a way to knock them all off the bed and onto the floor. She also continues to draw her left hand and fingers to her mouth and cuts them up with her teeth. She was almost totally healed up but now there are a few more cuts to deal with...
All of us and Guy went to the Macaroni Grill for dinner Thursday night and had a good time. Tori behaved as well and she had some small samples of pasta, cheese, ice cream and cheesecake. Whitney went to Denver for a dance competition this weekend and I spent most of my time in SLC at the Novell BrainShare Conference which we are servicing. I'll also be up there pretty much all this week as well.
Tori's therapies continue though we had to cancel a couple of her PT sessions this week because of agitation and vomiting... Meredyth stopped by twice for the ST sessions and she continues to focus on Tori's facial, mouth and tongue control. She still isn't sucking out of a straw or blowing through it but we're not stopping until she can. We have been holding back on feeding her by mouth as normal because she is having those agitation generated vomiting episodes almost daily. She also stayed up quite late a couple of nights this week and I can't even remember which ones they were. It's just a blur sometimes and the weekends are there so we can hopefully try and recover some of our sleep time.
We are still hoping and praying that we will see some more improvements during the next couple of months. Anything that can ease Tori's pain and anxiety as well as our burdens would be greatly welcomed at this time. I would like to update everyone with great Tori related progress each and every time but brain injuries don't work that way unfortunately... Progress is often described as "Slow and stop" and we can certainly attest to that description.
Thank you all as always,