China trip Date : 07.09.06 - days 24-25
9:30am. I take Sacha down to the 2nd floor for her acupuncture session whilst Rebecca has time for herself to have a shower and wash her hair..lucky girl!, the water has actually been brown through the tap for the last week so we’ve been quite reluctant to shower in it too!. I always seem to miss the the “hot” water time which is always at 8am as most of the Chinese patients wake at this time and shower…oh well, cold showers are good for you so they say!. Sacha is relaxed again in acupuncture and was there for 45 minutes today, I wonder if she would tolerate this if we were to keep this up in the UK, we will have to see!.
I noticed Sacha’s eyes seemed really healthy this morning, brighter than usual, or maybe I’m trying to hard to find improvements, however they do seem bright and clear.. could be possible if the cells have travelled through the blood vessels?
Later on in the morning we take Sacha out and have a walk around a nearby market, where Rebecca indulges in some more shopping and also buys me a designer watch which equates to around 20 quid…who’s to know its fake..right guys!!?. Sacha fell asleep as we take a look in all the cheap shops where Sacha is still the centre of attention.
After physio we take another walk into town to see if we could get hold of any more cheap dvd’s. As Sacha needed some water on our journey we had to do the usual and give her some water via her gastrostomy tube in the street. This caught the eye of a passer by and she continued to stare in amazement throughout the whole process, you get that a lot around here, this and spitting just about anywhere and just about anyone, girls also take pride in clearing their throats wherever they care to be, all a cultural experience!. The darkness fell after we took a look in an electrical store and even though Sacha was prepared for a chilly night we soon got tired ourselves so we jumped in a taxi back to the hospital, the driver must have assumed we were in an emergency when he saw Sacha as he sped off with his hazard lights on as if we were ambulance, weaving his way through red lights and masses of cyclists and pedestrians, I thought the taxi drivers were pretty mad here but this was an extreme white knuckle ride!…we got there a lot quicker than anticipated!
Not really much to report on Sacha today as she is recovering from yesterday’s injection, hardly a smile raised all day.
DAY 25
Sacha wakes up around 9 and we get her ready for acupuncture, not really up for it this morning, rather lethargic again. I take the whole weight of her again to lift her on the acupuncture bed. She cries immediately when the first needle goes in and continuously cries throughout the 20 minute session. By now she is feeling everything, every needle, every headache, any pain, whereas before we would never really know how she was feeling, very seldom a cry was heard. At this moment in time I feel for her and am glad to be coming home soon for her to recuperate. What an ordeal for a 5 year old to go through, around 43 hours of physio, over 240 acupuncture needles not forgetting the stem cell treatment. I cuddled her and carried her from the 2nd to the 10th floor (via lift) to her room where she continued to cry. I gave her some nurofen and she settled down after a while.
I received an e-mail from Annette last night as she had seen the video on the blog yesterday. She said she wasn’t happy with the way Sacha was and made her upset. I returned her e-mail to say that I thought it would be like starting over as they are new cells by teaching her to walk and talk all over again. It will be tough going but I feel we now have something to work on.
Its hard to say how well Sacha is now, or will be as after all these injections, She tends to become really weak (same goes with all the other patients here) but they’re not as small as her!. So far I can see that she has become so much less rigid and I see this in a good way, I guess we will have control over her body and the way she uses her muscles to teach her how to walk, stand and etc, rather than tense up her whole body and distort her posture and spine like she was.
She hasn’t been dribbling again today and I can only put that down to stem cells. It has been explained that she is now using the muscles in her mouth to control the saliva glands as before they weren’t being used…lets hope it stays this way - it will be a good indication if she starts degressing again.
She turns her head when she hears her name however I feel this isn’t a new sign, but all the nurses and staff here say that it has improved… I can remember how she was before she came to China, however I wasn’t with her the first 2 weeks. So I don’t know how she was - this disease moves so fast.
For now its too early to say how well she has done through the treatment. Something has definitely happened, something has changed. I am glad she’s more relaxed, I’m glad she’s more happier but will it last, no one knows. We’ll just have to wait and see.
Sacha is to have her final injection tomorrow via I.V.
So many people have offered time and energy to support Sacha we have made a 'big' thank you page. Do tell us if we have missed you off the list!