Saturday, September 3rd - Day 76 Update

Hello there,

Tori slept for most of Friday night but it was hot in her room due to some more air conditioning problems... So she didn't really get into that deep sleeping mode that she needs until about 4:30am or so Saturday morning. She had her trach button unplugged again and had her humidified air mask on over it. She continues to have a good coughing spell every 1-2 hours throughout the night.

All of the therapists, PT, OT and ST ran through their typical routines except on the weekends they cut their time with Tori in half. So Maria, Guy, Sophie and I made up for the lost therapy and then some!! :-) We went through all of the stretching and balancing exercises that we know to this point on Tori. We had her completely exhausted by 7:00pm tonight. After that, we spent much of the remaining evening with Guy and Sophie because they are leaving for France tomorrow and won't be back for a month... We love you both so much and are going to miss you greatly!! Please come back soon!!

Maria and I placed Tori in her wheelchair today for another 1.5 hours. Today we spent most of our time outside as it was cooler and there was a nice breeze going by. Tori really enjoyed the outside elements today. We sat in the shade in the front of the HSH and Tori tried tracking all of the automobile traffic passing 50 yards away in front of her. She can track the automobiles quite well and whenever one would pull into the HSH she would track it until it stopped. If people were walking in she would track them as well. She tolerated and excelled with this type of stimuli the entire time we were outside. I believe the cooler temperatures will allow us to this more often.

Uncle Todd and aunt Laurie also came up today and gave Maria and I a chance to go out for dinner. Afterward we took Tori to her favorite place at HSH - the HOT TUB ROOM!! :-) She really, really enjoys her baths and I've now requested to the nurses that she gets one every night. The baths totally relax her and all of her arms, legs, fingers, shoulders, etc. are so easy to move and manipulate while she is in the tub and afterward. In fact, she doesn't even get agitated at all as we bend her in all sorts of directions. The heat just loosens her up just as it does to any one of us. It is absolutely a great therapy for Tori.

Many people ask me what type of sounds does Tori make and can she talk? The answer is that she makes many, many different sounds but at this time none could really be considered words. She will 'hum' in a wide variety of tones and loudness levels, she has snorted, sighed, yelled and even screamed at times. In fact just yesterday there were several of us away from Tori over towards the second bed in the room having a conversation and Tori let out a loud yell as if to say "Hey!! I'm over here you know!!" :-) She is always be watching us but this time she gave us, or seemed to give us, another type of signal. When she can consistently do it I will be convinced. So Tori continues to learn how to create new sounds and we are all hoping that she can make them tangible in the very near future.

Maria is spending the night with Tori and since Tori is exhausted and the air conditioning works I believe they will both have a restful night. Tomorrow and Monday we will need to continue with all of the extra therapy we are giving.

Thank you once again and good night!!

-Tim