Tim Schmanski's blog

Good evening,

It was another relaxing weekend for Tori though she was anxious more than usual since she is now completely off the depakote. The keppra is now bumped to 1500mg doses twice per day but Tori does have myoclonus episodes where she cannot control the 'jerking' of her legs and at times her head... The myoclonus is always magnified when she is agitated or anxious and that is also when her seizures typically occur. We will watch her closely this week and determine if more keppra is needed and if we don't see improvement we might have to re-introduce depakote once again.

Tori spent alot of time in her wheelchair this weekend and we continued feeding her new foods. Tori had barbecued salmon and mahi mahi fish on Saturday night and this morning she had some waffles with butter and syrup. Again, the amounts are still tiny but she does chew and swallow well. In fact, she knows that she can't have another bite before the first is gone so I always ask her to open her mouth so I can check before the next bite. Sometimes she will swallow then open her mouth immediately after to show me she is ready for more :-)

Whitney and Brendan played hard with 'Tinkers' the Yorkie all weekend and it is nice because they all tire each other out ;-) All of them slept very well this weekend and 'Tinkers' also gave Tori alot of kisses while her was on her bed. Tori does tend to prefer her to stay more on her legs though :-)

Thank you for your continued support and we are greatly looking forward to the gold tournament for Tori later this week!!

-Tim

Hello,

Tori continues to sleep very well at night which is nice for all of us. Today Andy stopped by for an OT session and provided the usual arm, hand and shoulder stretching followed by some more trunk control.

Mike, Linda and Chelsea also stopped by for a visit and immediately afterward Maria and Whitney went and brought home a new member of the family. 'Tinkerbell' or 'Tinkers' for short is our new little Yorkie!! She is 10 weeks old and VERY CUTE!! :-) Cupcake the cat isn't quite sure of her new friend but she will just have to adjust.

Thanks again!!

-Tim

Hi there,

It was a slow day for Tori outside of her ST session with Meredyth that went well once again. Tori had some cotton candy along with a sucker that 'lights' up when pressure is applied. So when she closes her mouth around it the light in the sucker shaft turns on. She quickly got adjusted to it and was turning the light on and off. She also had some yogurt and did her usual mouth exercises consisting of puckering, mouth opening, biting, tongue maneuvering, etc..

We had Tori in her wheelchair all during the late afternoon and early evening and she decided to take a nap in it while out on the deck. While she was awake she watched the hummingbirds and traffic going by on the street behind our home. She enjoyed a popsicle as well.

That is about it for today. Thank you all.

-Tim

Hello,

Today was a busy day for Tori and she started it off well by sleeping nicely Tuesday evening. The EagleEyes trainer and four others from the Alpine School district started their visit around 10:00am.

I knew when I scheduled the meeting that 10:00am might prove challenging because it was right in the middle of Tori's usual, late morning nap. Tried as we might we couldn't keep Tori awake enough unfortunately to do an evaluation with the software... We did review her current condition and her communication means with all who were present and we are trying to establish a consistent method for testing her cognitive ability. I might take alot of trial and error. I also sat down and reviewed numerous software applications that are available and will start trying them with Tori. We will get the EagleEyes evaluation system for one month and try as many applications as we can. We also talked about environmental control options which would allow Tori to turn on the lights, TV, change the channel on the TV, etc.. I think that may be a ways out but it is always good to explore options. So the visit wasn't wasted and I feel we accomplished enough.

Andy also visited and provided an OT session with Tori. The usual arm, hand and shoulder stretching followed by sitting and trunk control. Maintaining Tori's range in all of her limbs continues to be a challenge and we are trying everything we can to help her.

Tori also ate mashed potatoes tonight!! She actually ate alot of them. In fact it was probably the most she has eaten since the early days at the Health South Hospital last winter. It was really interesting feeding her because we were all in the family room sitting on the chair and couch while Tori was positioned ahead of us closer to the TV. I would stand up and give her bite then return to my chair. After Tori finished off the bite she would turn head and eyes around as much as she could to look at me in the chair!! 'More please!!' was what she was indicating of course :-) And so she got more, and more until she finally filled up. We will keep pushing ahead on the mouth feeding front as Tori is demonstrating great consistency in her chewing and swallowing.

Hello everyone,

Here is another dual day update since I was traveled all day on a business trip to Seattle on Monday. Tori has done a little better the past two days as far as the seizures go because she hasn't had any. We are being more proactive and steady in giving her half doses of xanax or zanaflex prior to her getting in an agitated state which brings on her myoclonus or involuntary muscle twitches.

Today we finally spoke with one of the neurologist's at the PCMC who helped determine Tori's weaning schedule of the valproic acid or depakote. We know from experience over the past year that depakote keeps Tori's myoclonus, or dystonia as some believe, in control. The problem is depakote is very hard on the liver and liquid depakote is hard on the colon as well and we experienced that first hand... The only other medication that can help with myoclonus and keep her awake is the keppra which we are increasing as the depakote decreases. There are other medications but they are heavily sedating... We are also on the last week of depakote but will probably add a couple more. She told us what we wanted to hear which was to raise the keppra to 2500mg per day from 2000mg per day. We will see if that decreases Tori's myoclonus and if not we will increase it some more. It is definitely a trial and error process unfortunately...

She also mentioned she doesn't believe Tori is having seizures per say. But Maria and I have witnessed them and fully believe they are. She brought up all of the EEG's that we did on Tori a while back and none of them indicated seizure activity. But we never caught her in one of these episodes back then either... We have a neurology appointment set up at the PCMC at the end of the month.

Meredyth also stopped by today for an ST session. Tori had lemon and cherry juice along with chocolate pudding. She also had a frozen 'water stick' and practiced closing her mouth around it. Tori was also very clear in using the 'big button' when indicating her choices.

Hello again,

Time for a combined weekend update!! :-) Tori had one of her typical and relaxing weekends right along with the rest of us. She slept well both nights and spent much of both days in her wheelchair.

We also went to Costco on Sunday with her and had a BBQ afterward with Mark, Julie and kids as well as TJ, Lorrie and kids. Ryan and Melanie also stopped by during the early evening so it was a full house for a while today.

Tori snacked on numerous foods this weekend including popsicles, cheese, frozen smoothies, fish and chicken. The pieces are still very, very small but she can certainly manipulate them in her mouth, chew and swallow. We just have to keep practicing and building up the amount as we can.

Tori's depakote or valproic acid is now down to four 250mg doses per day while her Keppra dosage has been increased to two 1000mg doses per day. But Tori had 3 seizures during Sunday... She has them when her tremors or 'shakes' reach a certain uncontrollable state and they last 30 seconds to a minute. Afterward she is initially very scared but is then completely calm and still. We are going to schedule a meeting with the PCMC neurologists and discuss alternatives because our confidence in eliminating the depakote is not so great right now... We haven't seen seizures since last fall and we are not excited to them once more.

Xanax, ibuprofen and zanaflex were used once again throughout the weekend to keep Tori's demeanor and temperament in check. I've been reading many other anoxic injured blogs out there and many people have totally eliminated all medications. It was very hard for each of them of course but it is the right goal to shoot for.

Thanks again everyone,

-Tim

Hello,

Tori slept well once again Thursday night. Andy also paid a visit for another OT session and did the standard arm, shoulder and hand stretching routine along with some sitting and trunk control.

Tori had a good demeanor most of the day but needed a couple xanax and ibuprofen doses to help her. She also watched numerous movies throughout the day as usual and her favorite morning show 'Ellen'. Tori is never agitated when 'Ellen' is on and watches the entire show very attentively.

I went to a demonstration of EagleEyes which is a software solution provided by the Opportunity Foundation of America in SLC today. The software and associated hardware allows people with disabilities to control a mouse and interact with various applications. You can use a camera mouse or sensors attached to the forehead and cheeks. A completely paralyzed person who can only control eye movement can interact with this system. Schools in Utah are going to be the first to get the system and several have started their programs already. Tori will have the first, in home evaluation ever done next Wednesday. If the system works well enough we will provide a donation to get the solution. I believe Tori can use it and we will find out next week.

Thank you all,

-Tim

Hello again,

Tori ended up sleeping all during Wednesday night and I'm sure the birthday activities had much to do with that. We should have birthday parties for her everyday :-)

Today was relaxing for Tori as she had her hair cut and colored. She is blonde once more!! :-) I will post some new pictures as soon as I can. She remained calm and relaxed and basically did exceptionally well during the 2-3 hour hair salon ordeal. Whitney also had her hair done so Julie had a busy afternoon. Thanks for your efforts Julie!! :-)

We are riding out visiting doctors at this point because Tori has been doing better the past few days. We will continue to wean her from the depakote and try to monitor for any negative signs or symptoms.

Tomorrow I will be attending a demonstration of some new software that enables communication for disabled people. It looks very promising and I hope to evaluate using it with Tori.

That is all for today. Thank you all once again,

-Tim

Good evening and thank you for all of the birthday best wishes for Tori.

In all honesty we were not sure how or if we were even going to have a large birthday celebration as of a day ago. It is certainly not the Sweet 16 birthday we have always envisioned for Tori and there is still great pain and sorrow in our hearts... But after considering that she is miraculously still here and fighting with us each and every day - she deserves her Sweet 16 birthday just as she would have had it. So we had a large birthday party for her that included many of her friends and family.

Tori immediately made our decision well worth it because her beautiful smile was present once again as all of her friends gathered around her. Thank you Tori, we realize and understand how difficult it is for you to show that beautiful smile. We hope and pray everyday that we can see it more often.

There were over 30 people at Tori's party and many more were there in spirit. I couldn't begin to name everyone there but we wanted to offer special thanks to Chris and Sheryl for letting us use their home and pool. Tori remained awake, aware and calm for two and half hours. She watched all of the activity around her and had individual conversations with many of the guests. She also had some of the great pizza, cake and other snacks that were available. She received some great birthday cards and gifts including a song written for her, clothes which are always a great teenager choice :-), movie DVD's and a ceramic Angel among other items. Thank you everyone!!

Brendan and Chris also kept all of the girls entertained in the pool. One of these days we are going to get Tori in the pool somehow but she watched all of the action intently. I've posted a couple of pictures in the Pray 4 Tori Image Galleries but the majority of them are posted here on Guy's flickr site. Please enjoy them!! :-)

We also decided against going to the PCMC today because we didn't want to risk having Tori admitted there on her birthday. Tomorrow we will speak with the doctors on Tori's recent symptoms and decide the next steps.

Hello,

Tori slept phenomenally well once again Monday night and didn't wake from her sleep once. She went from 10:00pm until 8:00am.

Andy stopped by today to complete another OT session with Tori. Tori had her arms and shoulders stretched in all directions and she did some sitting and trunk control as well. For some reason, I don't believe Andy has been contacted about doing a new evaluation on Tori yet. I'll have to investigate that some more tomorrow.

Tori continues to have the 'shakes' as we call them and they are beginning to scare her since she has no control over them. Only zanaflex and xanax are keeping them under control... Tomorrow we will try and contact the PCMC doctors for some advice and we might just take her up for another KUB to make sure all is well. Tori's bowel movements are inconsistent once again...

Tomorrow is also Tori's 16th birthday and I don't believe she wants to spend it at the PCMC and we surely do not either... We will hope for the best and shall see what tomorrow brings.

Thank you for your support,

-Tim