Saturday and Sunday, May 19th and 20th

Hello again,

Tori remains at PCMC tonight but we are hoping and praying it is the last night she (we) will need to be there. Tori didn't sleep at all for Maria on Friday night either and she finally went to sleep Saturday at 1:00pm. She was totally exhausted by that point of course so she slept through Saturday afternoon and night while I was back at the hospital. We have continued to raise her baclofen pump levels during the weekend in 100, 200 or 300 microgram increases. Right now Tori is getting 900 micrograms per day and she will probably get another 200 micrograms tomorrow morning before we try to get her out of there. Her muscle tone and spasticity has definitely decreased but it is has been harder to gauge this weekend because she is still quite lethargic and tired. She is still recovering from being up for so long and she hasn't really been in a 'normal', non-agitated awake state where we can test her arms and legs.

Tori basically slept for most of Sunday but Maria called me an hour or so ago and said she was very agitated again and she even pulled out her G-Tube once more... They placed it back in quickly and we are going to try and get a spare before we leave. They also need to try and make Tori sleep tonight so we can get her back on schedule. She will be completely off again and that is never fun for anyone. We shall see tomorrow how well she sleeps tonight...

My brother TJ, Lorrie and the kids stopped and visited Saturday as well as my good friend Alan. They all agree it is much nicer visiting Tori when she is home and I couldn't agree with them more. I also had a conversation with Tori's rehabilitation physician Dr. Gooch and I now have an understanding on what happened with Tori's lumbar puncture and baclofen test last June. I'll provide more information on that adventure in my next update.

Thanks again for all of the support!!

Tim, Maria, Tori, Whitney and Brendan