Wednesday and Thursday, January 30th and February 1st - Day 19 and 20 in Hangzhou, China

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.

We've also been trying to get Tori to kick our hands with her feet as we hover them several inches over her feet. She is definitely firing to her hip and thigh muscles to raise her leg but it will often come several seconds after asking her without much control as well. Her legs appear to be 'jerking' but in a different fashion than her usual rapid and 'tremor like' myoclonic movements because the origin of the movement is from her hip and thigh. She is trying to move and control her legs without a doubt. We'll keep her working on this front of course as well as trying to get her to slide her legs together when they are placed apart. Perhaps the control she has gained can eventually apply to her legs and feet as well.

After getting Tori comfortable and sleeping during the early evening Wednesday, Maria and I decided that it was way past due time for a break from Chinese food and the couple of Pizza Hut pizzas we've had as well... So we went to the New Century Grand Hotel and ate at their international dinner buffet that included western style food. We enjoyed ourselves thoroughly by eating prime rib, steak, potato wedges, BBQ pork and chicken, a real salad, cheese, fresh fruit, various deserts and the grandest treat of all homemade ICE CREAM!!! :-) There's just NO WAY the restaurant made money on us that night!! ;-) hehe We 'rolled' out of there after we were through and returned to the hospital where Tori was still sleeping comfortably.

The weather has also been much improved lately and since a wind storm came through Wednesday night the skies were quite clear today. This allowed us to view the entire area surrounding the hotel and there were buildings as far as you could see in every direction!! Since the hospital is one of the taller buildings in the area it gave us yet another perspective on just how large and populated this area actually is.

Tonight two out of three new patients arrived from Hungary so the ward is close to full. One of them hasn't arrived yet because the airline wouldn't let him fly without the medical letter and approval needed... Been there, done that!! I'm anxious to speak with one family because this is their second trip for SCT and I'm curious as to the improvements that prompted a return trip. From my understanding, the majority of that patient's improvements were seen 3 to 6 months post SCT and that is certainly encouraging news as well. I don't say too much about the children who are patients here in respect for their privacy but the great spirit, strength, courage and determination displayed in spite of their challenges is truly inspiring. I know there isn't a one of them that will ever stop trying or give up.

Thank you for the continued love, prayers and support for Tori and our family.

The Schmanski Family