Tim Schmanski's blog
Tori continues to do well and she had a good week and weekend. She is rarely agitated and it is much easier to calm her on those occasions when agitation does set in. It was very nice out this weekend and she spent plenty of time outside with Guy, Brendan and I. Maria and Whitney were off to Dallas for another dance competition but will return late tonight. We are also very excited because Grandpa and Grandma Schmanski also arrived today and will be spending some time with us at home again.
I'm happy to report that Tori can now entirely finish off a yogurt or applesauce!! She had more cheese, french fries and some steak this weekend as well. So her eating and swallowing progress continues and we will keep working on it so she gets stronger and stronger. I'm finding that she does better with larger bites but I'm still hesitant in giving them to her... Meredyth also continues to work on Tori's mouth control as well. Tori can close her lips around a spoon and can do it on a straw as well. But still no straw sucking action yet.
Maria and I took Tori to the Shriner's Hospital for a checkup and surgery scheduling and afterward to the PCMC for a baclofen pump refill. Tori will have tendon release surgery on both feet sometime in early June. They will be sending us a final schedule this week and Tori will need to wear casts on both feet for 6 to 8 weeks afterward. She will also have new hand splits made while she is there as well. The surgery will require a one or two night stay at Shriner's. It is important for Tori to have her feet corrected so we can begin to place her in a stander once again. I've now placed stander shopping back on my list of many, many things to do.
Thank you all once more,
It appears that Tori, Tinkers and I survived the week while Maria, Whitney and Brendan were in Las Vegas for spring break. They left Wednesday morning and Grandma Harris stayed at the house helping me with Tori until early Saturday afternoon. I ran back and worth from work during the week to help with Tori who did just fine with her Grandma for the entire time. We even drove up to SLC to shoot a commercial for an upcoming Golf Tournament in St. George and I'll be sharing the details on it here shortly.
After the commercial shoot we stopped at the Red Lobster where Tori had some shrimp, crab meat and some diet coke. She did very well during our early dinner by eating nicely and remaining calm and attentive throughout. Tori continues to eat better and better and she even ate and entire string cheese stick during the week. We also went to dinner at Applebees with my brother Todd, Laurie and their family on Sunday afternoon. Tori did just fine once again and ate some french fries and drank more diet coke. The extra eating combined with the additional 500+ calories per day of liquid nutrition has brought Tori's weight back up again. I'm not sure by how much but I can tell she is heavier when I pick her up to place her in her wheelchair. We'll see just how much she has gained later this week at the Shriners Hospital.
After Tori spent Saturday morning outside watching me mow the lawn, I decided to take her out to a movie. We went and saw "Night at the Museum" together and we both enjoyed it of course. Afterward I took her for a drive around Orem to check out the town. She spent the majority of the weekend in her wheelchair with Tinkers and I watching movies and basketball games. She was very calm, aware and attentive during the entire weekend and was just slightly agitated only a couple of times.
Tori had PT and ST sessions last week and Royal is seeing even more improvement in her stretching and limb range. I also continue to provide PT as I can and it's to see the Tori can rest her arms down along her sides. She continues to do well with her nightly arm raises and movements as well. Meredyth's ST session this week was very encouraging and pleasing because Tori was so engaged in the exercises. Meredyth did more card games where she would write the same word on two sheets of paper and purposely misspell it on one of them. I happened to be home to watch Tori accurately identify by looking at the misspelled or correct word when asked. I still find myself questioning just how aware she is but seeing her in action like this always gives me more hope. It is always encouraging to witness and I hope and pray she continues to surprise us all!!
Tori is still doing very well lately but I am behind a little bit on updates once again... Tori remains typically calm and not agitated throughout the day and we are using far, far less xanax and zanaflex that we once were.
The Dance Club held their year end concert and Maria, Brendan, Tori and I watched Whitney perform in many routines. All of Tori's friends were performing as well and Tori did very well being around them and everyone else after the performance finished. Tori watched all of the concert and lasted the entire 3 hours!!! That is quite impressive for her as she normally would become restless and agitated after 2 hours tops. She was very calm, alert and attentive to all of the routines and watched them very closely. We were on the front front row so the dancers came very close to her at times. Whitney did phenomenally as usual and it ended up being a pleasant night for all of us. I posted a few pictures in the images section in the right hand column of the Pray4Tori site.
Tori is spending more and more time in her wheelchair lately and around us all in the kitchen and family room much of the time. This helps us in keeping her eating snacks and dinner through her mouth. She is still doing well on that front and we're trying more and different food items each day. Tori received her ST and PT late last week and did well in both. She is staying alert and participating which is nice to observe and Meredyth and Royal appreciate it as well.
Maria had Tori outside for much of the day today and they worked in the yard. Thankfully Tori didn't get another sunburn this time. Maria is planning on taking Brendan and Whitney on a spring break trip later this week so it will probably be Tori and I at home. I'm sure we can find something fun to do as well!! :-)
Finally, here is another great article on Stem Cell research in China. It's still amazing to me how many people question our decision to go to China of all places?!?! Research it people as it is not the communist China of many years ago... China also has a trillion dollar budget surplus so just where do you think they will be spending it???
I'm making a much more of an effort to provide updates within 2 or 3 days once again. It's always so much easier to create updates when Tori is actually doing better of course :-) Hearing and updating about Tori isn't nearly as fun when she isn't doing as well...
Fist off, here are a few announcements. We received a call from Senator Orin Hatch's office today to inform us that he will be mentioning Tori tomorrow on the floor of the Senate in Washington DC. It will be broadcast on CSPAN at 9:00am MST for all of those interested. He is pushing for Congress to pass the Stem Cell Bill which of course will happen followed unfortunately by yet another George Bush veto... It is frustrating to say the least since the majority of American citizens want this bill to pass. The last line of the article sums it up quite well - "It will send a lot of this research offshore and it will diminish our standard of excellence in our country when it comes to scientific research.'' Come on George, please do the right thing on this one so we can get moving as a country on this front!!!...
This Saturday Whitney is also having her year end concert performance at Timpview High School (3570 N. 650 E. Provo). The concert begins at 7:00pm and anyone is invited. Tori will be attending as well. There is also a benefit "Acapella at the Point" concert for Travis Ashton and his trip to China for SCT being held at the Electric Park inside of Thanksgiving Point in Lehi. It begins at 7:30pm and tickets can be bought at the doors of each event. It was also nice to finally meet Travis and his mother Missy today. Their trip to China begins in early June and are already hoping and praying for great success.
Alright, now to Tori who has had a couple more very good days. Meredyth had another very productive session with Tori and she had her selecting the correct characters form the computer for a "Planet of the Apes" collage. Yes, those wonderful apes once again. Tori would pick out the various ape characters by pressing the "Yes\No" switch to indicate which ones belonged in her collage. She didn't miss once and had a lovely collection of apes in the end :-) Meredyth concluded the session with more mouth exercises and tonight Tori ate small amounts of cheese, chicken, bread, corn kernels and Hagen Daz ice cream for dinner. Plus some more chocolate and strawberry banana fruit smoothie. We are challenging her to try and keep up with her little brother Brendan's eating habits. We don't think she catch him though at this point since the kid is an "eating machine" ;-) Her PT sessions for the week should also begin tomorrow.
Hello again everyone and Happy Easter!!
It's been a week since my last update so prepare yourselves for alot of positive reading on Tori!! :-) Tori's Botox fully set in last week and that combined with her recent Artane medication increase for muscle tone has made her a completely different girl!! A far, far less agitated and mostly calm and pleasant girl that is which is of course wonderful for all of us to experience again. She still has a little agitation each morning after her typical great night of sleeping but she is now calming quickly and it does not last all day as before. Besides that her vomiting has almost completely stopped once more!! Her whole upper body and arms are visibly more comfortable and she is once again moving them freely and placing them basically where ever you ask her to. You can also stretch her arms and hands once more as the tightness is greatly reduced. It is really, really nice to this once again and Tori even tried to reach into her Easter Basket this morning.
Since her arm and hand control is back to what it once was Tori is also able to participate much more in her ST, PT and Megan visits. Meredyth came over twice this week and Tori did very well answering questions with precise selections using her right hand on the Yes/No switch. Again, it's basically a large switch with two 4"X6" buttons labelled "Yes" and "No" and when either is pressed a voice pronouncing "Yes" or "No" is heard. Meredyth was holding up cards with the name of a month on it and would try and trick Tori. She would hold up the "May" card and would ask Tori if it snowed in May to which Tori would press the "No" button. Tori informed Meredyth that Santa Claus doesn't visit in "July" and that the trees do loose their leaves in "October". She also worked on some simple pictures with Tori and had her trying to make sounds once again. She is getting better but it is very slow moving progress... Megan had long question cards which she would read to Tori with incorrect and correct words inserted within the sentence. Tori would have to choose the proper pronunciation when the correct word was inserted. Tori did reasonably well with this challenging exercise and Megan will be bringing more fun and games next week.
Our trip to the PCMC (Primary Children's Medical Center) in SLC went well Thursday morning. Maria, Brendan, Tori and I arrived just after 9:00am and Tori went in for her botox and phenol injections at 10:00am. They sedated her first then gave the injections to her wrists, forearms, biceps, shoulders, neck, pectorals and throughout her upper back. She came out after 45 minutes and spent almost another hour in the recovery room while her sedation wore off. So we loaded her back into the van and headed home so Maria and Brendan could celebrate his 6th birthday in a little better fashion by going birthday present shopping :-) He enjoyed the day much more upon returning home.
We were a little alarmed when they weighed Tori and she came in at 96lbs... We don't trust those bed scales that much but we knew she had lost some weight after staying relatively steady at 105lbs for so long. Her feeding routine hasn't changed in some time and we are wondering if the increased muscle tone, agitation and sweating during the past couple of months caused her to burn far more calories than usual. She gets 2000 calories per day through seven 8oz cans of Jevity 1.2 liquid nutrition and that is well within bounds for her age and weight. We will probably try and give her an extra can a day for a while which will give her almost an additional 300 calories per day.
Tori has definitely been sore for the past few days but her arms are thankfully so much looser and easier to move than before!! We also bumped up her Artane prescription to 8mg per day from 4mg per day. We are going to be aggressively raising the Artane intake by 2mg per week until we begin to see some results because right now I don't think it is reducing her muscle tone at all... We've been giving Tori Tylenol for her pain and she was running a slight fever Thursday and Friday nights.
Megan from Timpanogos High School stopped by and Tori had a good session with her. Megan had cue cards with sentences on them and would read each sentence to Tori then hold the cards up and ask a question about one the cards and Tori would respond by looking at the appropriate card. Tori got about 8 out of 10 correct. Meredyth also had a positive ST session with Tori as she was making "aaaahhh" and other various sounds. Meredyth continues to focus on improving Tori's tongue and mouth control by doing numerous exercises with her.
It is certainly time for another update and I'm happy to report that Tori had a pretty good weekend as she was far less agitated than she has been lately and it was a welcomed change. She spent much of her time in her wheelchair hanging out in the family room area. We also took her out on the deck and did a Sunday drive around Orem which she seemed to enjoy as well.
Tori is sleeping exceptionally well and her routine is very stable at the moment. Our goal each night is to give her all of her medications at 10:00pm and to refill her food pump for the night. Tori is still drip feed 110ml per of liquid Jevity 1.2 through her G-Tube. After her medications it usually takes an additional hour before she begins to sleep. We haven't had to give her any Ambien to help her sleep for several weeks now. Tori will then call for us two to three times a night so she can be changed and typically goes immediately back to sleep. Tori then wakes up anytime between 8:30am to 9:30am.
Tori's high muscle tone is still very present but tomorrow is thankfully botox day!!! :-) If you want to somewhat experience what Tori constantly feels flex the muscles in your arms, shoulders, back and neck in an 'Incredible Hulk' type pose for a minute or two. Then imagine doing it non stop for about 14 hours straight which is about how long Tori is awake each day. Not pleasant I guarantee you.... With the botox and phenol injections strategically placed in those major muscle groups Tori's tone will be reduced and her comfort level will be greatly improved.
Tori's PT and ST sessions were cancelled Tuesday because she decided to do some projectile vomiting in the afternoon when they were scheduled... So the therapies will continue during the rest of this week.
Thank you for your support!!
The trend with Tori's high muscle tone and frequent states of agitation and discomfort continues... I believe we are in for another full week of it until she gets her botox and phenol injections. We are trying to counter her mood and pain with small, but steady zanaflex and xanax doses. At least she has kept her new G-Tube in up until now.
Meredyth went on a vacation this week so Tori hasn't had any ST sessions and she has had only one PT session to this day. Her last one of the week is scheduled for tomorrow. The weather has been pretty nice here this week so Tori has spent alot of time outside in her wheelchair which she really enjoys. I have been stretching her arms while she is in her wheelchair and she has been raising them in front of her, to her sides and somewhat over her head when I demonstrate the movements for her. It is hard for her given her muscle tone and her arm control isn't as well as it normally is either. Once the injections are done I am sure much of her control will return.
I have spent most of my time this week working between Orem and SLC for the Novell BrainShare Conference. I've had to race back and worth to pick Whitney and Brendan up from school and I'm thankful the conference ends tomorrow. Maria and Whitney are in Bountiful tonight for a dance competition which will run the next three days. So they will be travelling alot as well. All of us can get back to the more 'normal' routine next week!!
And that is the short update for today. Thank you for all of the love and support,
It has been another hectic week and here is another delayed update because of it. It has been very challenging lately as work is extremely busy and demanding and I am spending much of my time just trying to keep up with it all. Of course I could also spend every single day solely dealing with all of Tori's insurance, home care, health care and lawyer issues... It all just seems so overwhelming and never ending at times... But, we just have to take it day by day and try to get as much accomplished as we possibly can though I don't think we can ever be 'ahead'.
Tori's muscle tone is about as high or tight as it has ever been and unfortunately it continues to make her miserable... We have her on steady doses of zanaflex to relax her muscles and xanax to calm her agitation. We rescheduled her botox and phenol injections for March 29th so we are going to have tough it out for another week and a half. I guess I should say that Tori will have to tough it out for that time... Her right arm is so tight that when she scraped it across her stomach she actually pulled her GJ-Tube out of her stomach... It came out about two inches but it was probably still place able. So I gave her some medication to calm her and when I came back to see if it had taken effect she had pulled the while thing out. So I put in the new G-Tube we had as a backup and so far she has left it alone. Her arms are also bruised up from striking the rails on her bed. No matter how many pillows we stuff around her she always finds a way to knock them all off the bed and onto the floor. She also continues to draw her left hand and fingers to her mouth and cuts them up with her teeth. She was almost totally healed up but now there are a few more cuts to deal with...
All of us and Guy went to the Macaroni Grill for dinner Thursday night and had a good time. Tori behaved as well and she had some small samples of pasta, cheese, ice cream and cheesecake. Whitney went to Denver for a dance competition this weekend and I spent most of my time in SLC at the Novell BrainShare Conference which we are servicing. I'll also be up there pretty much all this week as well.
Good evening once again!!
Thank you for all of the concerned emails asking how Tori was doing and why the Pray4Tori site hasn't been updated as it normally is. It is quite obvious that there are many people checking Tori's updates on a regular basis. Tori is healthy and doing well and the main cause for delay was that Brendan and I have been at Disneyland since Friday night. We returned very late on Monday night and had a great three days in sunny California!! :-) We missed the rest of our family of course and maybe someday we can all go together once more. Maria, Whitney and the biggest Disney fan Tori were always in our thoughts.
Maria and Whitney held down the household and cared for Tori while we were relaxing. Tori remains very, very tight and we are attempting to move her botox and phenol shot schedule sooner. Shawn and Meredyth continued their PT and ST sessions with Tori. Meredyth assisted Tori in creating a colorful spring flower on paper and Tori choose all of the colors used. Tori did more work with the Yes\No switch as well and today they worked hard on trying to use a straw and a horn once more. If Tori can control her airflow in that fashion it will open up many other therapies and exercises we can try.
Tori has also been very vocal recently which we take as a very good sign. She will 'call' you at night if she needs to be changed, needs another TV channel or just wants some company. We are also doing our best to try and make her vocalize when she needs sometime. Practice, practice and more practice I guess. She may get tired of this approach and block us out but we'll gauge that when it occurs.
Tori, Maria and Whitney had numerous visitors over the weekend as well and it was nice enough outside on Saturday for some time on the deck. Even though Maria used sunscreen on Tori she did get a little burnt on her legs and neck. She looks like she caught more sun than Brendan and I and it was 90 degrees at Disneyland!! ;-)