Friday, August 19th, Day 61 Update

Hello everyone,

Tori is definitely beginning to feel much better as she is remaining awake all day and is typically alert and in good spirits. We haven't used Valium since early yesterday evening and we are doing our best to avoid giving it. She began to take a nap this afternoon and was pretty much asleep several times until some Phlegm developed in her trach which had to be suctioned of course... She is also coughing much more than before which is another great sign that she is healing.

Tori began this morning with a nice hair wash and second coat of nail polish on her toe nails. After speaking with the doctors we also decided to remove the NG-Tube and suction tube from her nose. Tori has her beautiful face uncovered once again!! :-) Once it was removed we decided to get Tori into her wheelchair and go for a ride. She did the best she has ever done today during her ride and very actively gathered in the scenery with her eyes. She would often focus on kids as we walked by them. We took her outside on the 3rd floor balcony and it was very bright for her!! It took her a minute or two to adjust her eyes but when she finally did she enjoyed the view of SLC. In the short 5 minutes we were out there Tori heated up quite well and got a good sweat going so we took her back to her room immediately afterward.

Tori's feeds have been increased to 100 milliliters per hour. There is one concern with the increased amount of Bilious we are venting from the GJ-Tube in her stomach. It is not nearly as much as before but it is something we are watching very closely.

The physical therapists delivered Tori's elbow splint today so we quickly placed it on her arms and did a two hour alternation between them. The results were immediate because her arms stayed elongated quite some time after the splint was removed. This practice will continue indefinitely. We also ordered some additional splints for her wrists because she tends to keep them in a curled position. We also upped Tori's Baclofen back up to 100 milligrams per day. We witnessed minor Myoclonus related activity today and that initiated the change. We had dropped it to 80 milligrams per day earlier in the week.

The bite guard continues to work wonderfully!! Her lower lip is healing very nicely now. Tori did disengage it several times but she has been letting us get it out after doing so. No one has lost a finger yet... ;-) We place it back in quickly afterward to not give her another biting opportunity.

I've been saving the best news of the day towards the end of each update lately to keep everyone reading through the first sections :-) Today we saw a reaction from Tori that we haven't seen for what seems like an eternity. I was standing by the bed just after nurses Abbie and Lindsay had changed and positioned Tori. Abbie was leaning over her and Tori's eyes were as wide as they could possibly be and once Abbie's eyes connected with Tori's eyes a nice SMILE appeared on Tori's face!! It was kind of hard to tell with Tori's bite guard in place but I knew for sure afterward when I confronted Tori by stating "Did you just smile for Abbie!?!?". She responded again with another nice grin and made my day!! She actually made my last 5 weeks or so since we haven't had any smiles for quite a while... I believe some hoping and praying for more Tori smiles is definitely in order here :-)

Tomorrow is the fundraiser at Marilyn's house and Maria, Whitney, Brendan and I are planning on being there. The T-Shirts came in and they look absolutely great!! I think Guy will be posting pictures of them tonight. We will also have some nice stickers available so no more painting your cars!! Unless you still prefer to do so of course :-) I would like to encourage everyone to participate in this event and please introduce yourselves to us if you do attend. We hope to see you all there!!

Fundraiser location:
191 South Dry canyon drive
Lindon, Utah
Map and Directions

Contact information:
Marilyn Hess - (801) 787 5773

Thank you everyone once again and until tomorrow,

-Tim