Tuesday, July 19th - Day 30 Update

Hi everyone,

The majority of Tori's day was very positive today but at 9:00pm or so tonight she had another severe Clonus episode. Her Melatonin and Valproate doses were given just prior to 9:00pm so we thought they might finally put her to sleep. It didn't quite work so Haldol had to be given again to calm and sedate her... It is probably a good thing for tonight anyway since they are extubating Tori's room partner Brady tonight and there is alot of noise and people inside the room. She could never sleep through that normally. Speaking of sleep, we have been trying like mad to get Tori to take a nap during the day and have been unsuccessful. Tori's agitation would be far less severe throughout the day if we could get her to just rest for a little bit. We're not sure what to do about this yet...

I also spoke in depth to Tori's neurologist Francis today and actually had him come witness an episode of Tori's Clonus in the late morning. He diagnosed her episodes as Clonus rather than Myoclonus because Tori has more constant muscle contractions and posturing during the late stages of her episodes. He also placed her on a new drug called Baclofen which is again supposed to limit the Clonus or muscle contractions. The first dose was given at 3:00pm today and given tonights activities the dosage will probably have to be upped tomorrow... He explained to me that there is a vicious cycle between Tori's agitative states and the Clonus or Myoclonus activity. One can cause and feed the other at anytime and when they are both severe is when we have the most problems... He also stated again that the Clonus activity should be temporary and last anywhere from one week to a month. We are hoping for the one week option for sure...

We were eventually able to contain the initial episode witnessed by Francis with the help of a visit from McKenzie and her mother Marilyn, Kara, Bree and Nate. Tori immediately calmed down on upon their arrival and went into her very alert, happy, smiling and laughing mode of behavior. It is such a joy for everyone to see her in this state!! We just need it to be that way ALL of the time now!! :-)

Tori had another 'Day at the Spa' treatment today with the sponge bath, hair shampoo, leg shave, etc.. She also sat very comfortably again in the practice wheelchair for about 35-40 minutes today!! She did very well with her Physical Therapy as well. She is continuously trying to sit up now and each day more and more strength in her arms and hands is felt. I also don't believe they put her back on the respirator after yesterdays 31 hour stint and even if they did it was only for a minimal amount of time. She could be well beyond the 31 hours now.

In closing tonight I wanted to share an experience that happened today with one of the Physical Therapy doctors that visited Tori. She basically examined Tori to sign off on giving her the Baclofen. This doctor, who shall remain unnamed and unidentified, was one of the very, very pessimistic and totally unhopeful doctors who visited Tori a few weeks back when she was basically still in her comatose state. She examined Tori and gave her an EXTREMELY negative assertation and review of Tori vocally in Tori's room with several of my close friends and family members present. She basically wrote Tori off... She is also sooooo lucky I wasn't in the room at that time!!!... So now get this - She did NOT recognize that she had already examined Tori previously because Tori was so aware, awake, active, vibrant and responsive!! In addition, Tori was also in another room the last time she saw her which probably threw her off. As Tori was moving her mouth in an attempt to talk she even mentioned that it will be nice to hear her voice at some time!! Now is that TOTALLY AWESOME or what!?!? As I silently witnessed this I just kept thinking to myself "She doesn't know that it's Tori. She truly does NOT know that is Tori!!"

I held back greatly and actually did NOT confront her with the facts I mention because at some point in the future, I am going to personally introduce her to Tori and let them have an actual interaction and conversation of their own. I will ALWAYS HOPE, PRAY and STRIVE for that day to come and there are so many, many others who will being doing the same!! KEEP FIGHTING TORI!!

Thank you all again and good night,

-Tim