Tim Schmanski's blog

Hello there,

Tori slept well Sunday night and Monday morning. She had a nice hair wash as well this morning and that continues to be one of her favorite activities. A relaxing hair shampoo seems to take the edge off no matter how agitated she may be.

Megan stopped by for a session this morning and Tori did some more disco ball switch work. Megan also did some questioning exercises with Tori. Sometimes she used reference objects and other times she did not. Tori wasn't responding as well as normal because she was rather sleepy at the time.

Grandma and Grandpa Harris also visited for a while today. Grandma Harris has had some lung issues of late and hasn't really been able to talk. She is sounding better at this time though.

Thanks again for all of your love and support,

-Tim

Hello,

Tori and the rest of us had a good but busy weekend. Whitney had a dance competition in Ogden so Maria and I traded off staying at home with Tori. Brendan spent the whole weekend with TJ, Lorrie and his triplet cousins. Tori did pretty good as well this weekend. She slept reasonably well though she is still requiring some nasal cannula oxygen assistance at night. She also seemed to become more agitated at times which we countered with half a xanax and half a zanaflex doses. Combining half doses of those two medications works well because it doesn't completely knock Tori out. She remains awake but calms down quite nicely. The agitation typically presents itself in the afternoons and again, we don't quite understand why but it is a pattern Tori has had for some time now.

Tori spent alot of time in her wheelchair again and hung out with everyone in the kitchen, family room and event the deck for a little while. Tori had some pasta, mashed potatoes and more ice cream as well.

Kourtney, Michelle and Gentry stopped by for a visit on Sunday and we convinced Kourtney to take this picture with Tori. We haven't seen them for a while since Kourtney left The Dance Club so it was great to them again.

That is about all for now.

Thank you all!!

-Tim

Good day,

We have been continuing to give Tori a little bit of oxygen during the night. She can maintain a 90% blood oxygen level now when she is relaxed and about to sleep but it goes down 1% to 4% when is sleeping. So we still need to help her out a little with 1 or 2 liters of oxygen support. She has selpt well though during the past couple of nights.

Megan from THS visited on Thursday and Tori did some more work with the switch. She can consistently turn on and off the disco ball with her right hand and particularly her right thumb. It is the one digit she seems to have great control over. She can raise and lower it as instructed and since she doesn't need to pick up or move her arm or hand there is no trembling. Megan plugged in Tori's CD player and a lighted Halloween pumpkin and Tori spent some more time turning them on and off.

Meredyth also stopped by Thursday afternoon for an ST session. Meredyth was working hard to get Tori to make different sounds but there wasn't much success. Tori make general sounds but getting her to utilize her tongue and mouth shape is the challenge. It will definitely take alot of hard work on this front...

Meredyth also brought out the Mac notebook and had Tori completing some very simple puzzles. The 5 pieces would be displayed and when Tori hit the mouse button a piece would be placed. Tori would then continue until the puzzle was filled.

I'm taking Whitney and Brendan to spend the night in Ogden on Friday. Whitney will be dancing all weekend and Brendan and I will try and spend some time with Todd, Laurie, TJ, Lorrie and all of Brendan's cousins. It should be fun!! Maria will come up on Saturday and I will then head home to take care of Tori.

Thanks again everyone,

-Tim

Good evening,

Tori has been doing better sleep wise during the past couple of nights. She is waking about 3 -4 times per night but after a changing she is fine and returns to sleep. We have still been giving her about 2-3 liters of oxygen during her sleep because as her heart rate and breathing rate drops she needs a little extra help. When in this relaxed state her blood oxygen level drops to 86-88% without extra oxygen. So we will continue to provide it until she can maintain 92-96%.

Megan from THS came to the house on Tuesday and dropped off some equipment since Tori was having her late morning nap and would not wake up... I was able to use the new switch with Tori later in the afternoon with success. The switch, a 3" in diameter red button, can be connected to a standard 120V AC electrical outlet. We have attached it to a 'disco ball' that rotates and projects colors on all of Tori's walls and ceiling. Tori loves it!! The switch can be configured to shut off the power anywhere from 0 to 60 seconds. Tori will press the button with her right thumb and watch. Then when it is finished she will click it again to watch some more. It truly is a cognitive action and she knows exactly how to start that 'disco ball' once again. We can hook any 120V AC electrical appliance to the outlet and Megan will try and cook something with Tori on Thursday. There are many, many other possibilities with this type of device and others like it. I would eventually like to see Tori controlling her own environment with regards to lighting, TV channels, TV volume, calling for assistance, etc.. We shall see.

Whitney brought Brendan to her school today for some activities and Brendan had so much fun he didn't want to leave :-) Whitney continues to dance like crazy and she has her first competition of the season this weekend in Ogden.

We had snow sticking on the grass tonight!! Yes, I know that is just crazy!! But we thoroughly enjoyed ourselves as we watched Tinkers the dog get acquainted with SNOW. We opened the front door and Tinkers went into the snow covered grass and after that we have never seen a dog run so fast!! She was running through the snow and sliding all over the place and it continued when we let her in the house and she had snow stuck to her legs. She was trying to lick it off and Brendan was literally rolling on the floor laughing!! Tori could also hear all of the commotion and watched intently from her room as Tinkers ran back and forth. I'm sure she was entertained as much as we were :-)

Hello again,

Tori slightly vomited several times during the early morning hours of Sunday morning. There wasn't much but we believe she must have aspirated some of it because you could hear the 'rattling' in her breathing and she was wheezing. Her blood oxygen level was about 82-85% so we had to place a nasal cannula on her and give her some oxygen. This lasted all day Sunday and Monday night and we kept it on her for most the day as well. This afternoon we removed it and Tori was maintaining 88-90%. We left it off for a while but are going to keep it back on while she sleeps tonight. It is set at 3 liters which helps her get 98%.

Other than that small episode Tori did pretty well this weekend. You can tell she is sore from all of the shots so we gave her alot of motrin and let her rest. Today was pretty relaxed and you can definitely tell the botox has had a positive affect because her arms are much more movable than they were and she doesn't wince in pain when you try and move them either.

Marilyn stopped by early this evening to visit and Tori was calm and collected during that time. Tomorrow Megan will stop by and try some new techniques she learned at the BIAU (Brian Injury Association of Utah) Conference held this past Thursday and Friday.

Thank you for your love, prayers and support as always,

-Tim

Hi,

Tori had her next set of botox and phenol shots on Friday. Maria and Grandma Schmanski took her to the PCMC in SLC around at noon on Friday. Dr. Gooch did several phenol injections and numerous botox injections in Tori's biceps's, forearm's. shoulder's and upper back. It was very challenging and as they tried to hold Tori's arms stretched outward Tori had another seizure... Next time we will need to sedate Tori before the injections.

Tori slept well Friday night since she had a busy day and didn't have a nap as well. She had a relaxing Saturday as well. The botox won't have full affect until for 3 days. The phenol has immediate affect so she should have much less pain in her shoulders and upper back.

Brendan and Tori watched 'Over the Hedge' in her room Saturday night. They had a good time and Brendan could be heard laughing outside the room frequently. Tori is sleeping already as I am finishing this post and hopefully she will be sleeping soundly throughout the night's once again.

Thank you all,

-Tim

Good evening,

Wednesday night was another sleepless one for us as Tori wanted company and didn't want to sleep again... This pattern is pretty much exhausting Maria and I and we sure are hoping it will be stopping soon. By the end of the week we are both 'spent'... Tori didn't really have a nap at all today so we are crossing our fingers that tonight is the night. We shall see.

Tori had an ST session with Meredyth today and she did quite well as she usually does with Meredyth. They did numerous mouth exercises including mouth puckers and tongue maneuvering. Tori also had some suckers during this whole process. Meredyth then used her cards with mouth positions and the corresponding sound. Tori could pick the correct card after hearing the sound the vast majority of the time. She is picking by looking at the correct card.

Guy left for Boston again today and we'll miss him some more. It was very nice having him stay with us for a few days and we are looking forward to the next visit. Tomorrow we will head up to the PCMC in SLC to get Tori some much needed botox injections!! Maybe that will help relax her some more at night and then we can ease back on all of the zanaflex we have been having to use as of late. It is hard for Tori to be comfortable when she is clenching her fists, arms and shoulders constantly...

Thanks again everyone,

-Tim

Hello again and I'm trying to catch up on my updates again...

Tori's night trend of needing some company in room seems to be popular now. She will moan loudly to call you in and then wants you to stay by her bedside for some TV watching. It is not bad once a night but getting called in several times makes for a long, sleepless night...

Maria and Whitney arrived home from Boston on Monday evening and they brought Guy back with them!! :-) Guy is spending a few days at our house and is working from the Novell office in Provo during his stay.

Tori's upper extremities are getting tighter and tighter unfortunately and she is very ready for her next round of botox shots this Friday at the PCMC in SLC. Her arms, wrists, shoulders and upper back are extremely tense and numerous doses of zanaflex are needed throughout the day to help ease this. At times you need two hands to pull away her arm from her chest and she even starts to rise from the bed during other times.

Outside of the tone issues, Tori has been is her normal mood patterns with some agitation setting in during the late afternoon and early evening hours. She is still eating though and had about 20 bites of cookie dough ice cream the other night and some squash tonight.

We should have some therapy visits to finish off the week and again, Friday will be spent mostly in SLC at the PCMC.

Thank you for all of the love and support,

-Tim

Hello,

Tori finished up the week with another good weekend. She didn't sleep solidly though either Friday or Saturday nights. She wasn't really upset or in any pain she merely wanted someone in the room with her. Tori will moan quite loudly when she wants you and she had me running back and forth from my room to hers. I would comfort her and watch some TV with her until she fell asleep again. Then after another couple of hours she would call for me again. I still prefer her sleeping throughout the night but I can't complain too much because I have seen far worse nights...

Tori sampled peach dessert, chocolate pudding, various popsicle flavors and finally some roasted marshmallows this weekend. They are still very small samplings but at least she isn't afraid to try anything. Tori was also able to spend some more time on the deck in her wheelchair and there is definitely snow on the mountains so that practice may be ending here shortly.

Another week starts tomorrow and thankfully Maria and Whitney will be coming home as well. Guy is also going to tag along and spend a few days in Utah and that should be fun.

Thank you all once again,

-Tim

Hi all,

Thursday and Friday proved to be low keyed days and nights for Tori. She slept quite well during the nights and had good days as well.

Tori continues to become tighter in her arms and upper body. We have been giving her half doses of zanaflex throughout the day to help ease her muscle tone. She will have another round of botox injections on October 20th and they should greatly help with her tone issues as usual.

Tori had some small bites of Grandma Schmanski's enchilada casserole while in her wheelchair tonight and I continue to give her samplings of basically anything we are eating.

Not too much else to report on this time. Maria, Whitney, Guy and Sophie are having a good time in Boston.

Thank you,

-Tim