Wednesday, September 21st - Day 94 Update

Hello everyone,

Tori ended up sleeping absolutely great Tuesday night as predicted!! After 38 hours straight of being up she slept right up to her first OT session at 9:30am.

They actually began the therapy while Tori was still sleeping but she woke up quickly when the stretching began... After about 20 minutes of therapy on her arms we put her in her wheelchair and proceeded to go outside for a while. Tori hadn't been outside for quite some time and seemed to enjoy herself by watching all of the auto traffic and people entering the hospital. The OT therapists did some stretching on her outside and left me with her after a while. I eventually decided to give Tori a tour of some of the UVRMC. We went to the large gift store they have inside and Tori had the chance to look at many different items. After that we headed back to the room and she fell asleep on the way. She remained in her wheelchair sleeping for an additional 1.5 hours.

I met with Tori's respiratory technician today and we discussed the goal of getting Tori's button trach removed as soon as possible. So we plugged her first thing this morning and she will remain that way as long for as she can which hopefully is forever. Remember that a trach is an open entry to infections. It was very hard to watch her struggle swallowing her phlegm during the first few times she coughed but she finally learned to swallow it. She has now been plugged all day and seems much more accustomed to swallowing after coughing. She does tend to wait as long as she possibly can before initiating a cough though. Tonight she will remained plugged as well.

After Tori's ride in the wheelchair she took another quick nap until her 2:45pm MRI. She was given some Valium beforehand and the MRI went smoothly. The results are now being analyzed and compared to her her previous two MRI's. We should find more information on the results tomorrow.

Tori will be starting with another medication called Dantrium. Dantruim is designed to work directly within the muscle and should help with her muscle tone and spasticity. Baclofen is designed to accomplish almost the same thing but from a neurological standpoint.

We ended up weighing Tori today on her 'Blue Bath Boat' but it proved unsuccessful since the large device did not fit correctly on the scale. So we will have to try once again tomorrow... We forgot to weigh her earlier in the wheelchair as well. Tori ended up having a bath tonight!! She loved it as usual though it was a little bit different than her previous baths. She was placed in a big, blue bath device that had sides which folded up to give her a 8"-10" depth. We used two shower heads on her which filled the tub up quickly. We washed then drained and rinsed then drained. It actually works quite well.

Tori's Ross Jevity 2.0 arrived today and she was switched over to it immediately. One other item I should mention is that Maria and I are now being trained on getting all of Tori's medications put together and administered. We need the hands on experience so we can be ready for the eventual day Tori returns home. No better time than now we guess.

One of the therapists mentioned today he witnessed for the first time Tori tracking while she was outside and placed it in his report. We thought that comment was rather interesting given she tracks ALL the time. I guess when you are around Tori pretty much 24X7 you see more of this but this was concerning to us and I will now ask to view the progress reports each day. After Tori's bath Maria and I did a little tracking exercise on Tori of our own to make sure we aren't just crazy. Maria held the Teddy Bear about two feet in front of Tori's face and asked her to look at it. Maria then moved it all the way to the right as Tori's eyes and finally head followed then all the way to the left where Tori's eyes and head followed once again. So we are still pretty sure she can track at will. I guess we need to do this demonstration tomorrow for all of the therapists to make sure.

Thank you all once again and good night!!

-Tim