Tim Schmanski's blog

Good evening,

Today marked the first day in quite some time where Tori didn't require ANY extra medication other than one dose of ibuprofen this morning!! She was basically NOT agitated at all during the entire day!! No xanax, no zanaflex, no valium, nothing at all. Her myoclonic tremors and sensitivity to touch were also hardly noticeable during the day so Tori is definitely making progress.

The control of her thumb on her right hand and her pinky finger on her left hand are also back. Lately she has been so tense in her arms that relaxing her hands has been very troublesome for her. She can now relax them both and raise and lower them to meet your thumb with ease. Her wrists and most of her fingers are still very tight though...

Tori had some hamburger and cheese tonight but she didn't care for the olives at all. She spent some more time in her wheelchair mostly watching Tinkers chase Brendan around the house. She seems to enjoy that except when Brendan starts screaming during the chase :-)

Tori even slept quite well Monday night which is a very welcome change. She briefly woke up but went back to sleep soon after. Hopefully the great sleeping trend will be back with us all.

Thank you all for keeping Tori in your prayers,

-Tim

Hello there,

Tori actually had a good Labor Day as she rested well and did not really become agitated at all during the day. There were also very little myoclonic tremors which was nice to see for a change. Perhaps she is making some progress on that front.

Tori had a half a strawberry and banana yogurt for breakfast and we were also able to take her for a drive today. Besides that she spent some time on the deck again and watched numerous movies throughout the day.

Tomorrow her regular therapy sessions should begin again and we will have begun another week.

The success from the golf tournament is also continuing as many of the attendees have spread the word and now there are numerous, kind and generous people taking Pray4Tori bracelets and candles to many of the high schools in and around SLC. Thank you to all who are doing this for Tori!!

Until tomorrow,

-Tim

Hello,

Tori continues to have difficulty sleeping through the night and she struggled with this all weekend unfortunately. She seems to be doing a little better through the day and has had less of the myoclonic tremors but at night it is a different story... The episodes are not as bad if she can remain somewhat calm but if she becomes agitated the episodes last longer and are more powerful. Needless to say but Maria and I spent alot of time watching very early morning movies with Tori this weekend.

Tori wasn't feeling well enough Friday night to attend the football game so we kept her home. There will be other opportunities once we get her feeling better. Her depakote intake is now at 250mg 4 times per day. We will increase it to 500mg 4 times per day by the end of the week. That would be a great place to stop if we can so we will keep her steady at that dose for a while to see if it will work.

Tori spent alot of time in her wheelchair this weekend and is trying basically anything we are eating at this point. She had some steak, salmon, potatoes and more ice cream of course!! Tori also went shopping at Target and Walmart.

Todd, Laurie and most the kids visited on Sunday and Erick and Leann stopped by as well. Tori did well during the visits.

Thank you all for the continued love and support,

The Schmanski's

Hi again,

Tori is having more difficulty sleeping now as her myoclonic tremors are appearing during the night unfortunately... So we have decided to speed up her depakote intake by almost doubling it. She is certainly miserable and scared during the episodes so the quicker the relief the better.

Meredyth and Tammy who are both ST's worked with Tori today. Tori wasn't her usual self but did participate during the session. Tammy works for the Alpine School District and will be involved in the upcoming tests that will be performed with Tori.

Tori is still eating nicely at least and she enjoyed triple chocolate ice cream and peach dessert today. She spent the afternoon and evening in her wheelchair as usual and watched Brendan and Tinkers chase each other around the back yard.

That is all for today,

-Tim

Good evening,

Tori slept very well Tuesday night but she had far more myoclonic tremors today than the previous couple of days... She had the tremors almost all day and that makes it a rough day for everyone unfortunately.

Tori finally fell asleep around 5:00pm tonight but she didn't sleep long so I put her in her wheelchair. She did better while in it and we were outside for quite a while visiting with neighbors and watching Brendan, Lily and Owen play together.

We are now giving Tori 125mg of depakote 3 times daily and will almost double that dose in 5-7 days. We are hoping to stop around 500mg doses 3 times daily. Tori was getting 1500mg doses 4 times daily before which relates to a whopping 6000mg per day. We would have great progress if we could get her myoclonus in check with 1500mg total per day. Anyway, it is all about setting goals and that is what we are shooting for and we should be at that level in 2 weeks or so. Then we begin removing the keppra.

Tori is sleeping very comfortably now and we are hoping and praying for a better day tomorrow. Tomorrow should also include some therapy sessions as Tori PCMC trip has thrown her schedule off a bit.

Thanks you,

-Tim

Hello again,

Monday proved to be a relaxing day for Tori who had no therapies and thankfully no seizures as well. She did a have few episodes of myclonus though but not as bad as we have seen lately.

Today we headed to the PCMC in SLC for a visit with Dr. Benedict the neurologist and for another KUB scan on her abdomen. We have decided to officially end the removal of depakote experiment we have been trying!! Tori's comfort takes precedence at this time but we plan on introducing the depakote back very slowly and we are confident we will end up with an adequate dosage that is lower than the original one. The keppra will also be slowly brought back down to original levels and it may become the next medication we try and remove.

Tori actually did very well with Dr. Benedict and closed her eyes, opened her mouth, stuck out her tongue and moved her thumb and pinky finger on command. This is unusual because she typically won't do any of that with strangers... I also told her to use her voice and say hello and she responded with a nice 'yaaaaa'.

We then went down for the KUB scan where we laid Tori on a table and took a couple of x-rays. This time we decided to just stick around and wait for the results rather than heading home and getting called back like last time... We were pretty confident she was alright and after about 15 minutes we had the results that thankfully confirmed that. Then we were on our way back to Orem!!

Tori only had a half a xanax during the day today and was quite calm and relaxed. For a snack she had some cheese and water. Tomorrow the therapists should be beginning their weekly visits.

Thanks again everyone,

-Tim

Hello,

It was a very busy weekend for us all and Tori put in many travel miles in the van going various places. Tori slept very well all weekend and didn't wake up once during two of the nights.

Friday was Tori's golf tournament fundraiser which I recapped earlier. It certainly was a fun event and successful as well. Thanks again to everyone who participated!! Tori was calm and attentive throughout the event and spent probably 7 hours in her wheelchair during the day.

Tori unfortunately has had several more seizures during the weekend... She initiated two of them completely on her own without anyone even touching her. In extreme myoclonus episodes when her arms and legs are having tremors she eventually becomes completely stiffened with glazed eyes and then the seizure lasts for about 30 seconds. After she snaps out of it she is very scared and cries often with tears. It is heart breaking to witness... Then she is completely calm and very, very loose in all of her limbs. Her arms are almost spaghetti like and can be moved anywhere without much any resistance. The seizures take alot out of Tori we are afraid...

I spoke with the neurologist at the PCMC Friday and we are now maxed out on keppra at 1500mg doses twice per day. We are now trying to use inderal to control the seizures and myoclonus but thus far it hasn't seemed to have any affect on her. Tuesday we will be at the PCMC for an appointment and will discuss our next options. We will not tolerate having the myoclonus and seizures anymore even if depakote is the answer. It seems like we have gone backward over the last month or so...

Tori spent most of Saturday watching numerous movies and she waqs out on the deck for quite a while as well. Sunday was Costco day and Tori enjoyed all of the food samples like never before!! With Brendan as our guide, we made our way through all of the samples that included grilled chicken, cheesecake, fruit juice, tortillas, chip dip, ravioli and finally a Costco slushie. Tori just kept eating anything she was given!! At home when she is eating, we have been trying to make her consistently ask for more by vocalizing a 'Yaaaa' or making a sound. She will do it much of the time but not 100% yet so we'll just keep working at it.

Hello,

Tori slept much more like her normal self Wednesday evening and was quiet throughout the night. Her day was also pretty good.

Andy visited today and provided another OT session. Tori has extremely shaky once more as Andy went through the stretching and sitting exercises but she did end up making it through them all.

Tori spent over an hour today sitting in her wheelchair watching Maria on the computer. Maria went through all of the pictures on this site as well as many others. She also hit various web sites and the entire time Tori remained calm with her attention fully on the the screen.

Grandma Harris also fed Tori some strawberry jello and Tori just loved it!! She ate about 20 spoonfuls of it before we decided that was enough :-)

That is all for today!!

Thank you,

-Tim

Hello again,

We have been very, very busy lately with all things Tori, the golf tournament, an IEP (Individual Education Program), school starting for Brendan and Whitney, WORK!!, etc.. Thus the numerous dual day reports as of late. I'll try to get back on track though :-)

Tori had a rough night Monday night and we haven't seen one like it for quite a while... She woke up about 3:30am and stayed awake until 6:30am. She was trying to watch a movie during this time but she was agitated and had myoclonus 'jerks' going as well... After trying numerous medications to calm her we finally had to give her some valium which again, we haven't given her for some time. Tuesday night was a little better but she did have some trouble again that required some more valium. We are hoping for a better night on Wednesday.

Tori continues to have myoclonus episodes and the depakote dosage went to zero this weekend. We upped her keppra again to try and compensate. Unless we see some dramatic improvements within the next week or slightly more I am going to ask that we bring the depakote back. Tori is simply much more miserable and uncomfortable than she was before the removal of depakote started. We realize liver issues but she just can't go on like this... We are waiting for the neurologist's response to my proposal.

Tori continues to eat more and more!! She had some barbecue chicken, spaghetti, peaches with whipped cream, ice cream, popsicles, you name it and she is trying it. During dinner time we make sure she is in her wheelchair and let her sample and eat with the rest of us and she certainly enjoys it!! :-)

The golf tournament scheduled for Friday is coming together nicely!! We are so excited for this event and there has been ALOT of effort in putting it together. Thanks again Erick!! Friday is going to be fun for us all!! :-)

I met with numerous people in the school district and we have devised a schedule to get Tori started on various tests they provide. Getting a consistent communication form from Tori will be key and getting her to work with new people will be as well. I should have the EagleEyes computer this Friday then we can begin really using it and putting it to the test. I am greatly hoping that it will be the interface we are looking for. The goal for the IEP team is to have several tests complete within 30 days. They will also provide ST, OT and PT through the school and it will be interesting to see how Tori responds.

Hello everyone,

Tori slept wonderfully Sunday night and was calmer today than she was over the weekend. She still has the myoclonus at times though and it is often hard to witness her trying to deal with it since she has absolutely no control over it... It was really evident today when Andy gave her an OT session. She has very shaky as Andy completed stretching her arms, hands and shoulders and was pretty unstable during her sitting and trunk control as well.

Grandma Harris also arrived again today to help us out during the week. Tori spent more time on the deck today and had some small bites of a Carl's Junior $6 burger and some tastes of a fresh peach as well. Tinkers the yorkie also had some of the same :-) Then they both came inside and had some more small samplings of ice cream for dessert. Tori did very well with her chewing and swallowing once again.

Tori is getting ingrown nails on her big toes so Maria is trying to schedule a podiatrist to fix them. They are very sensitive to the touch and they are obviously causing pain for Tori. Tori has had them off and on over the past year but this time she will need some help to get them healing again.

Tomorrow Whitney begins junior high!! She will be in the 7th grade, have a locker, alot of classes and alot of new friends we are sure!! :-) Brendan will also start kindergarten later this week though he is not nearly as excited as Whitney... This time of year is another bittersweet period for us all as Tori always looked forward to the new school year... And we greatly miss having her excitement, smiles and joy surrounding us. When Maria registered Whitney at Oak Canyon, Tori's old school, the teacher assisting her asked if she was Tori's mother and after hearing Maria's reply she broke down emotionally and said that Tori was one of her favorite students and she is missed greatly by all of the staff at the school as well. We share in your pain but small encounters like this certainly help us all in supporting Tori on her journey.