Tim Schmanski's blog

Hello all,

I'm behind a little on updates again and this one will be short and sweet because Tori is continuing to improve and overcome her bout with hand, foot and mouth disease.

She has slept well over the past few nights and we are now only giving her oxygen when she sleeps and it is only 1-2 liters worth. During the day she is now just fine without it!!

The sores in her mouth, throat and tongue are almost completely gone. She does have a few sores on her chin though but they are in the healing process as well.

Rebecca organized selling Pray4Tori items at the THS carnival Wednesday and it went very well. Thank you Rebecca, Caitlyn and Jonny for helping out on this.

That is all for now.

Thank you,

-Tim

Hello,

Tori gave us what we all wished for last night and that was finally, a great night of sleep!! She only woke up twice and went back to sleep immediately after being changed. It sure was nice to sleep through the night once more.

Tori is already beginning to feel better thankfully. Using the benedryl and maalox solution inside her mouth is helping ease her hand, foot and mouth disease pain greatly. She isn't crying nearly as much as she was before. She has also been much more awake and when she is sleeping it is very sound and restful at 75-85 heart beats per minute. She isn't waking up crying every other minute either.

We are now keeping her oxygen input level between 1 and 2 liters and she is maintaining a 90-100% blood oxygen level. Her breathing is much, much clearer and less 'chunky' than before. Her clindamycin antibiotic is given every 8 hours to combat any possible pneumonia that may or may not be forming in her lungs. Being extra cautious here is good as we already know how bad a full fledged pneumonia can be...

So it was a day of good progress and we are looking forward for this trend to continue. Keep the prayers coming!!

Thank you as always,

-Tim

Tori appeared to be doing better Sunday afternoon but Sunday evening and early Monday morning was just like Friday night as Tori cried all night and basically didn't sleep at all... We checked her temperature Monday morning and it was 103.5 degrees and she was also at 4-5 liters of oxygen through her nasal cannula. She needed that to maintain a 88 to 94 blood oxygen level. When she coughed she was clearly in pain and a thick, green phlegm was also present. So it was indeed PCMC time for Tori and us once again.

Maria and Grandma Schmanski arrived at the PCMC ER just after 12:30pm and I arrived about an hour later. Tori had a chest xray and several KUB abdominal scans. The good news is that they actually looked fine!! The ER physician could hear a little crackling in Tori's upper airway but her lungs were in pretty good shape. We are quite sure though that she aspirated during some of her vomiting episodes. The interesting observation is that Tori has Hand, foot and mouth disease or Coxsackie virus. She has sores all throughout her mouth, tongue and throat and that is why she is in so much pain. It hurts for her to swallow or couch. We spent the afternoon debating what we were going to do which was check her into the PCMC CMU or bring her home. This time we opted to bring her home where we will care for her and administer her antibiotics ourselves. It seems that every time Tori stays at the PCMC she becomes sicker and we end up there for weeks... So we are going to try some home treatment this time :-)

The ER physician notified us that normal procedure was to admit Tori but he knew us and had confidence that she would be just fine or better with us at home. Several other physicians that we know we also in the ER and had no reservations against our strategy. We did promise them to have Tori's home physician pay a visit after a day or so to check her out and if Tori should take a turn for the worst we would immediately bring her back up to the PCMC.

Hey there,

The nice and relaxing weekend hoped for wasn't to be true as Tori was in constant pain and crying almost non-stop during her awake times... Friday night we tried about everything in the medication arsenal to get her to sleep - Lortab, xanax, valium, zanaflex, dilaudid, inderal, ambien... She was untouchable for quite some time unfortunately and her SATs also destabilized to the point where we had to give her oxygen again. Tori also vomited often so we started giving her pedialyte. We honestly haven't had a time like this for almost a year and quite frankly it sucks...

Seeing in her in so much pain and discomfort is so painful and it is just about unbearable... We believe it is part of the baclofen withdrawal but we have hesitated in taking her to the PCMC because she doesn't maintain a fever and her blood oxygen level has improved. Besides that we dread having to wait in the PCMC ER for anywhere from 4 to 10 hours... Sorry PCMC but your ER just isn't our favorite place to be.

Tori has improved somewhat Sunday afternoon thankfully as she was awake for some time without crying. She is still very, very tight and we have been giving her additional baclofen as well. Hopefully the worst is over and tomorrow she will be feeling much better. She definitely wanted company today and I spent some time laying with her in bed. She was completed awake and calm during that time and during the time Maria spent in her room with her.

Needless to say but Tori didn't get out much this weekend... We had a neighborhood barbecue that she didn't make as well. But again, it appears she is starting to recover so we will watch her closely tomorrow.

I always enjoy updating everyone on positive news much more but this week was downright trying... Please hope and pray for a better upcoming week for Tori.

Thanks,

-Tim

Hello again,

It has been a tumultuous past couple of days... It all started very early Thursday morning when Tori had another seizure but this one was much different than any seizures she had previously. She was grinding her teeth and generating large amounts of saliva and her eyes were moving back and forth horizontally. She looked very angry and was turning her head forcefully from side to side as well and lastly, the seizure probably lasted 3-4 minutes... It was quite scary because we didn't know if she was going to come out of it or not and in addition to that she wasn't swallowing all of the saliva and we couldn't get a suction yonker into her mouth to get it out because her jaw was locked and teeth clenched.

We were greatly relieved when she came out of it and as usual after a seizure she was completely calm and her body was very, very loose. The seizures must sap every once of energy out of her. Of course we had no idea why she had this new type of seizure. During the day Thursday Tori ran a fever and was also vomiting at times. Again, very sudden changes and nothing had changed medication wise so we were stumped...

Thursday night and early Friday morning were no better as Tori didn't really sleep, still had her fever and was quite agitated. We also got the results of her blood test that showed a 116 level on her valproic acid. Our goal is to have that between 90-100 and we expect her body to adjust and that she will get to those levels with the current 2000mg per day of depakote. We will see when the next blood test is taken in two weeks.

Friday afternoon during another evaluation with 6 alpine school district members we received a call from the PCMC rehabilitation team. They were wondering why Tori hadn't been in for a baclofen pump refill and we told them she was supposed to have received a refill while we were at the PCMC in July. Well, needless to say the refill never occurred during Tori's July stay... So basically Tori was out of baclofen which turns into a life threatening situation after a few days. Maria and Grandma Schmanski rushed her to the PCMC immediately and her baclofen pump was indeed empty. They estimated she was without baclofen for about two days and the seizure, fever and vomiting are all symptoms of baclofen withdrawal of course. Itchiness and nausea are other symptoms but Tori can't indicate those to us. So Tori is filled up once again and is receiving 1121 micrograms of baclofen per day.

It is because I love my daughter Tori so much that it hurts. It hurts every second, every minute, every hour of every day. Often there are tears as wonderful memories fill my mind and I think of all of those dreams that could have, should have been for Tori and our family. But harsh reality always sets in and my mind shifts to the present and the never ending drive for knowledge. Knowledge to help bring Tori back to us all. Knowledge to help give Tori a better quality of life. Knowledge to help Tori in any humanly possible way. So mostly I research and learn as to gain that knowledge and I am definitely not alone. There are thousands of others out there doing the same for their loved ones who are in similar positions. Each one reading information on medical research, on medications, on assistive technologies, on therapies and alternative therapies, on basically anything and everything to help their loved ones. I spend most of my time doing the same while conversing and learning directly with the thousands of others in numerous online groups and newsgroups, through other people's personal websites that are like http://www.pray4tori.com and so on. It is a never ending struggle for all of us and the challenges are certainly shared. Inspiration, strength and love abounds and without this support I honestly have no idea where we would be right now...

So early this morning I thought I would share with all of you an update I found tonight on my friend Dave's website. He summarizes our lives in his very straightforward and honest fashion and this just happened to have had an impact on me very early this morning. Dave's son Michael is also a near drowning survivor and I would encourage everyone to read about Michael's tragic and unfortunate story. Kid's, please make smart choices and don't succumb to peer pressure and parent's, please educate and advise your kid's accordingly.

Good evening,

Tori had another great night of sleep Tuesday evening but she was rudely awakened this morning when a construction crew started jackhammering a sawing the concrete sidewalk just outside her window... She actually had another long seizure when she woke up to all of the startling noise. We have noticed that she becomes extremely upset if she is suddenly awakened from a sound sleep and this time she went straight into a seizure unfortunately. She also had another seizure due to the same circumstances later in the afternoon during her nap. We believe all of the sidewalk crushing and sawing is done but tomorrow the new concrete will be delivered and poured and who knows how loud that will be....

Other than the seizure episodes Tori had a very calm day. She napped quite a bit which usually makes us more cautious as it has been a early sign of illness in the past. We are hoping she was just extra sleepy today. Tomorrow Tori will get some more EagleEyes computer practice in preparation for another school district visit.

Thank you all once again,

-Tim

Hello all,

I'll start by stating again that it sure is nice having Grandpa and Grandma Schmanski home again!! I know all of our other relatives in the Minnesota region miss them but we sure enjoy having them back because they help us all so much. Caring for Tori and trying to get everyday chores and activities done is quite the challenge and the more assistance that is available the better!!

The highlight of tonight's update is Tori's progress and general success using the EagleEyes (EE) solution. Monday's experiment with Meredyth and Christi went quite well and Tori has much, much more control of the mouse using the electrodes on her head and face instead of the camera mouse. The electrodes measure the angle of her eyeballs to move the mouse so her head can remain still. You can also set it for head movement as well but Tori seems better suited for eye movement only right now. Here and here are a couple of pictures of Tori with the probes attached. When I first installed the EagleEyes software and plugged the control box in it wasn't working... So I tore the box apart and found that the switch was faulty. So after some switch twisting and repositioning I was able to make the power finally turn on.

Once Tori was all connected we placed the computer in front of her and adjusted the control box for Tori so that the mouse was steady and the range of motion on the screen was correct. It does take some trial and error to get this right. Then we started the EE aliens application and watched Tori try and move the 'sight' on top of a green alien on the screen. The alien stays put for about 7-10 seconds before moving to another position on the screen. Once Tori gets the sight or basically the mouse on the alien an explosion occurs and the computer sound goes 'boom!!'. We instructed Tori to put the sight on the aliens and she started slowly getting 1 or 2 out of 10 but I was also adjusting the control box during this time. After 10 minutes or so Tori achieved her high score of 7 out of 10!! We'll shoot for even better scores next time. She became disinterested in the EE aliens game after about 15 minutes so we switched over the EE paint application.

Hello again,

It is time for another 3 day update and I apologize in advance for not being able to keep up on the daily updates lately... Things have been somewhat chaotic and I'm falling behind at times but I promise I will get back on track!! :-)

Tori had a very good weekend as she slept well and most importantly was very comfortable and rarely agitated. She might have had one dose of xanax and only a few motrins all weekend. We track every medication given to Tori daily and it sure is nice to look at her medication sheet after a day and see that nothing extra was given to her. A few weeks ago we were filling the sheet...

Grandpa and Grandma Schmanski have finally returned from their summer vacation!! We were all very excited to see them again and they will be staying at the house once again. We are pouring their new RV pad tomorrow so they will need to park the motorhome in a local RV park for a week or so. We had a nice welcome back barbecue tonight and even Tinkers had adjusted to them before they left for the night.

I spent more time with Tori and the camera mouse this weekend. Tori played Paint and Aliens once again. The camera mouse acts on head movements and not necessarily eye movements. Tori moves the mouse cursor by moving her head from side to side or up and down. I am finding that after 5-10 minutes she gets tired and then starts moving her eyes only to certain spots on the screen. The camera mouse can't pick this up so tomorrow I am going to glue the EagleEyes probes onto her cheeks and forehead. The probes move the mouse according to Tori's eyes and they should work much better. Meredyth and Christi will also be here to witness the attempt. The new 'Clicker' software I ordered still hasn't arrived but it should be here early this week. That software will allow us to create any buttons and button test we wish and I believe it will truly give us an indication of how well Tori can communicate. We are looking forward to trying it and we of course are hoping and praying that Tori can benefit from it.

Hello,

Tori continues to make progress as she has been sleeping better, less agitated and mostly calm during the past couple of days. These are certainly welcomed changes in her behavior and demeanor.

Thursday brought Meredyth and Christi over for an ST session and Tori did alright. We think she is still nervous having another person with Meredyth because she usually does exceptionally well with Meredyth alone. Tori has additional PT and OT sessions scheduled with the school district as well.

I've been feeding Tori yogurt everyday now and she is getting better at eating a half a container in each sitting. She also gets her fair share of cheese and popsicles throughout the day mostly in the afternoon when she is in her wheelchair. Each day she is spending several hours during the afternoon in her wheelchair.

Tori has been playing the EagleEyes games 'Paint' and 'Aliens' while using the camera mouse connected to my computer. She needs more work but she does realize her head and eye turns do move the mouse around on the screen. Now we just need her to consistently interact with the software. I have additional software on order and it should be here next week. We are trying to push much more on this front so we can accurately gauge Tori's cognitive ability. She just needs a method to answer questions and we believe using software is going to be our best option.

Thanks again everyone,

-Tim