Tim Schmanski's blog

Today was another low keyed day for Tori. She was in her wheelchair for much of the afternoon and was fed popsicle and nectarine pieces. Her chewing and swallowing were sound once again.

Marilyn also stopped by for a visit in the afternoon and hung out with us for a while. We are still trying to arrange Tori's therapy sessions for the week as well as the cognitive testing that will be done by the Alpine school district.

That is all for now. Thanks again,

-Tim

Tori had more great and basically uninterrupted sleep during Saturday night. She had a nice sponge bath and hair washing on Sunday and spent more time in her wheelchair. We also took her on a Sunday drive but didn't stop anywhere.

We have been feeding Tori more through her mouth and today she had popsicle, vanilla yogurt, pepsi and even some cheese. She seems to be manipulating and chewing the food very well again and is swallowing it nicely as well. We will continue to work more closely with her on the eating front. Tori is also getting better at positioning her lips and if you ask and demonstrate a 'pucker' or kiss position she can generally do it. Meredyth the ST can be given much of the credit for that and we have all been using a mouth training sheet she has derived for Tori.

Tori watched movies and relaxed for the rest of the day and early evening. Her valproic acid dose was also dropped to a lower level and this will be repeated every weekend for the next three weeks. She is still a little 'shaky' at times but we temper that with xanax as much as possible. Alright, that is it for today.

Thank you all for the continued prayers, love and support,

-Tim

Tori had a nice and relaxed Saturday and she spent quite a bit of the day in her wheelchair. Much of her day was spent out on the deck where she enjoyed quite a bit of a frozen strawberry banana smoothie and she found the time to take a nap as well.

While she was inside, she watched her favorite movie when she was a little girl - the classic 'Harry and the Henderson's' :-) Brendan also watched it with her and enjoyed it as much as Tori used to. Tori has been sleeping alot over the past few days but she has a good demeanor when she is awake.

Whitney had Hannah and Forest over for much of day and Hannah's mom Heidi stopped for a visit in the early evening. That is about all for today. Tomorrow we will try and get Tori out for a van ride.

Thank you,

-Tim

Tori slept well again Thursday night and she had a better day Friday than Thursday. Christine came and completed a PT session with her. Tori will be having insurance provided evaluation sessions for PT, OT and ST. They will compare against previous sessions and indicate progress and afterward they will determine whether to reinstate the visits. They want Tori to go to outpatient therapy sessions but the problem is the insurance qualifying hospital closest to us cannot handle a patient in Tori's condition. We would have to drive her one hour each way to SLC, get an hour of therapy and drive home and that is unacceptable because it would be very hard on Tori and the rest of us. The result of the evaluation should be known soon.

Tori, Maria, Whitney and I went for a nice walk around the neighborhood early Friday evening. The temperatures have dropped lately which makes this possible and hopefully they will remain on the comfortable side. We are looking forward to another relaxing weekend.

Thanks!!

-Tim

Hello all,

It was a slow day for Tori today but she did end up having a small seizure while Maria and Grandma Harris were giving her a sponge bath... Tori doesn't respond well when she is having her arms pulled in all directions during washing and since she is much more 'jumpy' than normal it doesn't take much to set her off. Tori trembles more and is 'shaky' as mentioned before and we are going to just have to try and ride out the transition period of removing all of the valproic acid (depakene) medication she is receiving.

We are compensating for some of this by giving Tori half doses of xanax throughout the day. The xanax will typically calm her within 20-30 minutes. Tori's sleeping patterns continue to be very good as she is basically sleeping through the entire night. We get up anywhere from 3-4 times a night to change and reposition her and she has been sleeping through that as well.

That is all for today. Thank you.

-Tim

Hello,

Tori slept well once again and was very rested for her therapies during Wednesday. In fact, Tori was wide awake all day and didn't even have a nap. She also displayed very, very minimal agitation throughout the day.

Meredyth stopped by in the early afternoon and completed an ST session with Tori. Tori was very responsive and did numerous tongue and mouth exercises along with vocalization efforts as well. Tori also had some water, a chocolate sucker that she picked and I believe some yogurt. Tori interacts with Meredyth exceptionally well and follows her instructions nicely. Meredyth then pulled out the old Macintosh with the BIG button for Tori to press and went through additional exercises with it. The main purpose is to help Tori communicate and Tori is asked to select a certain option as the software cycles slowly through the available selections like Drink, Hurt, Movie, Book, Eat, etc.. We are still trying to adjust the timing on all of this and I believe is cycles through the options too slow right now because it always seems Tori wants to hit the button much faster. We have been using a 5 second delay or so to this point.

Andy came later in the afternoon and provided an OT session with Tori. He did various stretching exercises with Tori's arms and shoulders and even commented that her range and participation were the best he has seen from her in a while. Tori was about 250 micrograms per day less on her baclofen the last time Andy was with her so this might have some bearing on the perceived progress. Andy also sat her on the side of the bed and did some trunk control and balance exercises with her.

Maria, Whitney and Brendan also made it home from Park City Wednesday night so the house was full once more. My next steps are to push the school district on cognitive testing for Tori and to appeal the insurance company once again...

Thanks everyone,

-Tim

Hi there,

Tori continues to do much better at home than in the hospital. She slept well once again Monday night and had a relaxed afternoon.

Tomorrow Meredyth will visit once more for an ST session and we are looking forward to getting Tori going on her therapies again. Not much else for today.

I spent the day watching Brendan 'own' the pool and hot tub in Park City. He is known as Tori's little brother to all of the dance girls. He sure burns alot of energy and keeps everyone entertained :-)

Thank you all,

-Tim

Hello again,

Tori slept well Sunday night and had a light Monday as well. She had her hair washed and spent alot of time out on the deck enjoying the fresh air and sunshine.

She has been handling her G-Tube feedings well and is getting 90-100ml per hour continuously. Since we are dropping her valprioc acid intake she does tend be be more 'shaky' especially when she is agitated. Hopefully this will eventually disappear as we up her keppra intake to compensate. We'll know how well it has worked in a month or so.

That is all for now and thanks!!

-Tim

Hello all,

Tori spent her first, complete day at home relaxing and watching movies just as she usually does on Sunday. She slept well Saturday night and slept in until 10:00am Sunday morning.

We also took her for a long drive during the afternoon that included a stop at Costco. Tori did very well during her tour of Costco as well as during her drive around Orem. She spent several hours in her wheelchair today and that had to feel good to her since it has been over 2 weeks since she last did.

Tomorrow we will try and initiate her ST and OT sessions once again and will also attempt to get some of the school district testing completed this week. Whitney is spending the night in Park City with the rest of her dance team and Maria and I will switch off stating with her over the next few days.

Thanks again and good night,

-Tim

Good evening,

After 24 days at the PCMC in SLC Tori finally makes it home once more!! She arrived at home just after noon today and spent the rest of the day relaxing and enjoying her TV again. She was very tired of the movies at the PCMC and many of them were playing 6 months ago when she was there...

So being home once again is the important update for today. We have switched some of her medications to crushed tablet form due to the pneumatosis issues that Tori just conquered. We are also trying to rid Tori completely of the depakene or valproic acid over the next month. We will be raising her keppra dosage to compensate. Tori's latest blood test showed her valproic acid level at 59 and we normally want her around 100. At 59, she would typically be shaking all of the time but she isn't now so we are going to attempt to drop it further.

Tori is relaxing and ready for sleeping at HOME as I finish this update. Let's all hope and pray for another long run of NOT having to return to a hospital.

Thank you all,

-Tim