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Hi Tim
This is Meenu here in california. We been watching Tori progress for many days. It is been amazing and blessing.
We used to live in utah (salt lake city) and my husband worked for Huish Detergents from 1984 till 1992. After that we moved to california and he was daignoesed when we found out that he has parkinson. At this time the problem has progressed so much that it is unbareable.we want to know how the couple from Minnesota is doing if we can get thier contact or some other patients who has parkinson.I will be in touch with you guys . God bless.
Thanks in advance.

Meenu Chanana

Hello again,

Tori's fifth and final SCT went very smoothly Wednesday afternoon. This time it was purely a spinal injection of 10 million cord stem cells. She slept on her back for three hours afterward then woke up and watched a couple of movies in the DVD player that we positioned vertically for her. We were able to move her and elevate her head again after the six hour minimum time frame. Thankfully it cooled down outside Wednesday and Thursday because Tuesday afternoon it was quite hot in Tori's room... They did find us a fan though and it helped alot. Tori is very uncomfortable when she is hot and her body temperature seems to rise much quicker and higher than the rest of us and that tends to greatly worry the staff here.

Tori had PT Wednesday morning only due to the afternoon SCT and Thursday was a normal therapy day complete with PT, acupuncture and EMT. The PT room is now pretty busy during the morning as there are three additional patients from Hungary and another one from the USA is arriving on Saturday. All of the activity in the room seems to help Tori because she is watching everything else going on and not really focusing on what James is doing to her. Tori has alot of new friends here!! :-)

I also finally met 7 year old Maya and her mother on Wednesday. Actually, Maya introduced herself to me by walking over to me on her own and placing her 'etch and sketch' right on my lap where she proceeded to draw for me. She is a sweetheart!! :-) This is Maya's second trip and I spoke with her mother Belle(?) about her improvements. Maya didn't experience any real improvements until 2 to 5 months after her first SCT trip. Maya has epilepsy and before the SCT she was having many seizures each day. Now has has basically none and her medicine intake has been drastically reduced as well. She speaks and concentrates better and now completes puzzles that were an impossibility before. She is also stronger and she has more stamina, balance and coordination. So now Maya has returned for her second round of SCT and they are hoping for even greater progress and improvement. And now we are hoping and praying as well.

Ni Hao everyone,

At least I have learned some basic Chinese while I've been here but everyone chuckles at my pronunciation of course. Hello! = Ni Hao!, Good morning! = Zao Shang Hao!, Good evening! = Wan Shang Hao!, Good night! = Wan An! and finally Thank you! = Xie Xie! Hey?!?! I'm trying just like they are trying English so it keeps us all laughing most of the time :-)

For Monday and Tuesday, Tori has been on her normal routine of PT in the morning followed by acupuncture and EMT in the afternoon. She looks and feels good the vast majority of the time and Maria thinks she is more alert and quicker in her response times. I believe she has much more control of her arms and hands. During the medical staff inspection this morning I asked and mimicked for her to demonstrate some of her new movements. Her right thumb to her nose, ear, chin and forehead. Everyone was excited and she giving out 'thumbs' all around!! It's somewhat of a 'high five' I guess as Tori likes to extend her thumb to touch yours. Of course we've also dubbed this movement either 'thumbs' or 'thumbing' :-) James was ranging Tori's right knee during PT today and measured a 65 degree bend in it!! Remember, it was only 7 degrees when we arrived and when Tori is resting in her wheelchair now it can easily rest at a 45 degree angle. Instead of having both legs extended in her wheelchair we are now extending the right one much less than the left. James basically has five days left before the final measurements will be taken and the improvement marked. We want to range Tori again when we return home at the PCMC because they have their measurements prior to us leaving. I know they will be quite impressed with her progress on this front. Now we just have to keep it up when we return home...

We always joke with James because his English is the most limited of the bunch here. We're still trying to bribe him into coming home with us by offering room and board at our home and access to the beautiful American women that are all over town :-) We can certainly make him blush especially when there are others who can translate around because they also enjoy ribbing James as much as possible.

Hello all on Superbowl Sunday!!! :-)

Fortunately for us, as satellite dishes are illegal in China, I have found some CBS internet video streaming sites so we'll be able to watch the game on my computer at 7:30am Hangzhou, China time. We'll have to set the alarm to wake up of course ;-) A Superbowl breakfast party?!?! Ok, we can try it once :-) We'll also have the game Tivo'ed at home in case we want to watch it again I guess.

Tori continues to do well as she has been calm and basically not agitated during the days and entirely sleeping through the nights. Saturday she had her normal rounds of therapy with James. PT in the morning followed by acupuncture and EMT in the afternoon. It didn't seem like she was as bothered as much during the PT as James went through all of his stretching routines. She didn't cry, scream or grimace nearly as much as usual but that just might have been due to her good mood I guess. If she can maintain that attitude for several PT sessions then I'll be impressed. When James is working with her fingers he can now place them in a totally extended and straight position without having Tori go ballistic. She even tends to keep them in that position for a little while after stretching but her brain eventually causes them to slip back into the curved wrist and fist position... Tori's brain is still sending signals to her muscles to 'clench' pretty much at all times. The tightness may vary but she is still continuously 'clenching'. Tori is now doing slightly controlled lifts of her legs when she is focused. We keep working on this by having her try to kick our hands when placed over her feet. Electrical stimulation on the acupuncture needles placed in Tori's limbs has been going on for a few days as well. This is designed to help her movement as well.

We are also trying to keep Tori eating each day. Usually a yogurt and pieces of a banana. One of our challenges has been getting her to close her mouth and lips around a spoon to take the contents off when it is pulled out. This has always been very hit and miss but she was able to do this very well in four consecutive bites last week!! I would still like to see greater quantities of food going through her mouth though and we'll keep trying of course!!

Hello again,

I wanted to provide a very quick update today to let everyone know that has Tori uneventfully and successfully received her fourth SCT!! She had the stem cells delivered through a spinal injection and through an IV. She is still resting on her back watching a movie as I am creating this update and at this point she seems to be completely over her cold. She slept the entire night and she was in very good spirits all day today. She also had a great PT session this morning with James as well. Since she had the SCT today, she had no afternoon therapies as in acupuncture and EMT. I'll post a more comprehensive update this weekend with exciting information I have learned from other patients who are here.

Thank you for the support!! :-)

-Tim, Maria, Tori, Whitney and Brendan

Greetings,

The good news for Tori continues as she appears almost totally recovered from her illness!!! :-) We still haven't heard what the sputum cultures have grown but it doesn't really matter at this point. What really matters is that Tori is sleeping through the night fine once more, coughing very little and clearing her throat nicely herself, having little agitation and having a normal and constant 36.8 degrees Celsius temperature. Everything is on track for her forth SCT via spinal injection and IV tomorrow!! :-)

Tori's run of the Azithromycin and Cefotaxime antibiotics will end tomorrow morning as well. We have had to alter her therapies for the past several days as she is getting her antibiotics intravenously each morning. So at 10:30am, James has been coming into Tori's room and providing acupuncture and EMT until noon. We then take Tori to the rehabilitation room for her PT session at 3:30pm. We believe Tori likes this schedule better as well because we don't have to rush to get her ready in the morning and maybe because James is more tired in the afternoon and can't work her as hard. I'm just kidding on that one as James always has plenty of energy and Tori knows or even dreads it!!... ;-) We have also stopped having Tori do the stander as it was obviously too painful for her and I doubt she was receiving an appropriate benefit from it... Since her left foot won't move into a standard position she was standing on her toes lightly and placing the majority of her weight on her right foot. Our plan is to get tendon release surgery on that left foot once we get home before placing her in a stander again. So James is now using that time to provide more massage treatment for Tori and she likes that much better anyway :-) We had Tori listening to an ipod during today's PT session and it seemed to take her mind off the therapy itself a little more. James also made her take notice of her right knee as it is now bending greater than a 45 degree angle!! Her left knee is improving as well but seeing her right knee bending like that again is really impressive. The post SCT and rehabilitation measurements they will take again before we leave should be very interesting as well especially when compared to the previous measurements taken when we arrived.

"Nothing is predestined; the obstacals of the past become the gateways to new beginings".
Nothing in life is easy everyone says. But the things we want the most are the ones that challenge us and make us stronger each day. I never really understood what that meant until our Tori that everyone loves. She is my inspiration, my hero, and my best example. I've known her for years now and every memory brings a smile to my face. She always was the leader, the pusher and the fighter, as she is now. Wanting to push when it seans like nothing will budge is what makes growth in a person and in everyone surrounding them. Since Tori's accident it is plain to see the growth in everyone around us. We see shirts, braclets, signs and hear the words. Thank you Tori for helping to push me every day for the things i want most, someday, i hope to be half the girl you are! I love you! You're beautiful and you know it too ;)! -Haili Walker

Good evening from Hangzhou,

Tori didn't get the good rest we had hoped for Monday evening and early Tuesday morning... She was pretty much up all night and I was as well trying to keep the phlegm in her lungs suctioned out. She wasn't really coughing at all to clear it herself as she was too weak to do so. We kept her on numerous medications including motrin, zanaflex, xanax and even ambien to try and keep her calm and to possibly help her sleep. It didn't help too much though as she kept building up phlegm in her lungs and was 'rattling' all night... We watched her blood oxygen level and temperature closely and she maintained 90% and above on her oxygen and her temperature was usu sally floating around 38 degrees Celsius or 100 degrees Fahrenheit.

By 8:00am Tuesday morning she was so exhausted she finally fell asleep. I suctioned alot of phlegm out of her during the night and at least she was sounding pretty clear before sleeping. The medical staff came by on their rounds at 8:30am and they took a sputum sample and ordered for Tori to start on two antibiotics which are used generally in China. They are Azithromycin and Cefotaxime and are broad spectrum antibiotics. So the combination of the two should cover a wide cross section of bacteria that is common in China and in this hospital and we will run three days worth. In the USA we would typically use Keflex, Levaquin and Zosyn on Tori for the same reasons. The last time Tori was in a condition similar to this was last July at PCMC (Primary Children's Medical Center) and we never did identify the bacteria through sputum samples that caused the condition. And that has happened previously with Tori as well so I prefaced the medical staff here of those occurrences. Our thoughts now are that Tori basically has a common cold which normally will last three to five days. We need it to be closer to three or four days because Tori's rescheduled SCT treatment is now slated for Friday afternoon...

Hello everyone,

It appears that Tori has hit her first 'bump in the road' during her China SCT journey... Tori woke up Sunday morning and was extremely agitated and down right angry it seemed. She had also worked her temperature up to 39 degrees Celsius and her heart rate to 150 beats per minute so we gave her a full inderal and xanax to calm her. She also has some 'rattling' or phlegm in her lungs and you can hear it well when she is breathing. She is coughing is up as needed but it appears she may have aspirated some of her saliva or something else. It could also have been from the extra food she has been eating through her mouth but she has been chewing and swallowing it very, very well and I have been watching her quite closely during eating periods. So we're not sure when at this point as she has been doing absolutely fine up until now. Her blood oxygen level is still in the mid to low 90's at the least. Perhaps this is a gentle reminder to us on just how quickly things can change with a brain injury... We really don't need any more reminders though... She calmed down after the medications but her temperature and agitation level fluctuated all day with temperatures ranging from her normal 36.8 degrees or so to 38.5 degrees and then back down again. Right now, her temperament is responsible for the fluctuations. If she were to consistently stay at 39 degrees then we would need to be concerned of a fever and then decide an antibiotic approach of some sort. A sputum sample would be needed first so we can begin to grow cultures. We kept her as calm and comfortable as possible during the entire day Sunday but she was miserable to say the least... :-(

Sunday night went well though as she slept nicely through it. On Monday morning it appeared she had improved but her temperature was still wavering between 37 to 38 degrees. We attempted to keep her cool and relaxed all day prior to her stem cell treatment and she was right on track right up to her scheduled time. The problem was that it was a bright, sunny and warm day and since Tori's room gets direct sunlight in the afternoon it turned into a sauna quickly and of course Tori's temperature and agitation increased as it normally does when she is in a warm or hot room... We tried opening the the windows and doors to cool it off but it didn't work. She was a solid 38.5 degrees when they wheeled her into the sterile surgical room and where they waited a little bit before deciding she was too warm to proceed... I agreed with the decision as we can't jeopardize Tori's safety and health and I don't really want 10 million new stem cells to be destroyed as soon as they enter her body either... So now we need to reschedule for SCT number 4 and try and get Tori's health back on track.

Hello again,

Tori's stem cell treatment on Friday was through the IV only so there was not a spinal injection this one time. Tori's next stem cell treatment will take place on Monday afternoon and there will be a spinal injection and an IV placement of the stem cells. Her IV of stem cells and nerve growth factor began Friday around 2:00pm and Tori immediately fell asleep. In fact she slept until about midnight and then she was wide awake... She thankfully let Maria and I sleep though while she watched several movies calmly and alertly. She would only make vocal sounds to let us know her movie was finished and when she needed another one so it wasn't too bad. Saturday morning Tori was agitated and worked her temperature up to about 38 degrees Celsius so we had to give her some medication to calm her and lower her temperature once again. The nurses still have a slight tendency to declare a fever anytime Tori's temperature is high so we just tell them to come back into the room after an hour or so and she will be back to normal. This has worked every time!! :-) Tori had only a slight nap today and has been watching a bonanza of Harrison Ford movies tonight with Maria. It is just after 9:00pm here now and Tori's eyes are finally beginning to close. I believe we all have a solid night of rest tonight.

Our latest awareness game during Tori's PT sessions is to have her find people by their names. Jenn, Tina, Wendy and of course any of the nurses in the room who happen to be there. The big joke is that Tori can always find James because she just has to look where it is presently hurting :-) We're still working on getting some velocity and power behind her right handed punch as well. The velocity is the hard part as once Tori makes contact with her fist on James she can push quite hard already. I am always present for Tori's PT sessions and assist as well and I personally see with each day improved range of motion on basically all of her joints. Some are better than others and her left ankle is still showing the least improvement... It will definitely need tendon release surgery upon our return to Utah. The stander is a challenge for Tori as well and it is all related to pain in that left ankle and foot when it is bearing weight. Tori's muscle tone and tightness was back during the past two days and was very unlike last Wednesday when she had extreme 'looseness'. James was sweating once again while giving Tori PT during the past two days.