Wednesday, August 24th - Day 66 Update

Hi again,

Tori's has now completed an entire day at her new HSH location!! Her first night also went largely uneventful as Maria and I took turns clearing Tori's trach after she coughed during the night. She continues to clear the Phlegm in her lungs entirely by herself in most cases. We rarely have to suction after she coughs. She slept throughout the night and the nurses and technicians entered her room every 2 hours or so to check and reposition her.

This morning began with a visit from the physical therapist who gave Tori a complete stretching and range of motion examination. She definitely pushed Tori to her pain points and will now outline a rehabilitation strategy and program around her findings. She also helped us sit Tori up then stand her up for a while. Tori responded well and did not become agitated. After that we placed Tori in her wheelchair for about 45 minutes but we did not do any touring this time.

The occupational therapist also appeared and ran another set of similar tests and exercises on Tori and she too will develop a program for Tori based on the results. The speech therapist came in next and completed her set of tests which included basic eye tracking and recognition, reaction to noise and light and many other response gathering type tests.

I spoke with all of the therapists and their associates today and informed them of our desires for a highly aggressive approach to Tori's therapy. Again, we want Tori going 3 hours a day or as close to it as we can possibly get. I believe the therapists are indeed on board with this approach and I am eager to see the programs outlined for Tori.

We also met with Tori's respiratory technician and placed Tori on a respiratory mask rather than a 'T' type connector with a suction device built in. We brought several of the trach suction tubes with us from the PCMC and we prefer them greatly over the default ones at HSH. Since Tori coughs so well, suctions are again limited and having a bulky suction tube always attached is overkill in our opinion. Plus it was harder to use than the PCMC unit. It was very encouraging that they took our input seriously and complied with our wishes. Believe me, after 55 days of using the trach suction device we EASILY passed the trach 'certification' questions they ran by us afterward :-) We also set another goal with the respiratory technician and Tori's doctor, Dr. Viceroy. The goal is to remove Tori's trach as fast as we possibly can which will involve aggressive testing and exercises as well. Both of them feel she is very close so we shall see. We will be trying a trach plug in the very near future which will allow us to HEAR what sounds Tori can make.

Tori was treated to a very special treat after her busy, busy day. We actually gave her a full fledged bath this evening and boy did she enjoy it!! We removed everything she was wearing and placed her on a waterproof, hoist like carrier. We then covered her with blankets and went down the hall to a room with a very large tub filled with warm water inside of it. We gently lowered Tori into it and she didn't flinch at all!! We kept her head and trach above the water of course and soaped and scrubbed her quite well. We also washed her hair and when we finished drying her off and placing her back into her bed afterward she seemed SOOOO RELAXED!! Yes, we will be doing this much more often for Tori :-)

The nurses are trying to get used to the mass amount of medications Tori still is taking. It is still much better than before but there are about 10 steadily given drugs and another 8 that are given as needed. Keeping Tori on schedule keeps the nurses hopping for sure. Our goal is always to lower the amounts even more and this will continue as we proceed through the rehabilitation efforts.

I wanted to close tonight by letting everyone know our optimal plans for Tori at the HSH. Removal of Tori's trach and having the very aggressive rehabilitation mentioned are our top priorities. I'm sure we will learn even more during our stay and as soon as Tori demonstrates enough positive forward progress, we are going to bring our daughter HOME where she truly belongs and deserves to be. Introducing her directly back into our loving and caring family life again will provide the greatest stimuli possible and it will surely help our family feel 'together' again. This is our greatest desire. The challenges for Tori will obviously continue but tackling them with all of her family and friends close by will be so advantageous. Please direct all of your thoughts and prayers to this goal and I'm sure it will happen much sooner than we anticipate.

Thank you all and good night,

Tim, Maria, Tori, Whitney and Brendan