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Sorry it’s taken so long to update Jays blog, it has been about 4 months since our return from China. Jay is doing well, the positive sides of his treatment is better concentration, and more co-operative. When we first came home his posture & walking had improved, this was due to the intense therapy he received in China but as we can’t keep up 2 - 3 hours of therapy a day, this side of it hasn’t improved anymore. Jay is still on a small dose of medication he started in China, to help reduce how active he was, this definately helps, it stops him getting so frustrated. (he is still very active, it just reduces it very slightly).
April 26th, 2008
We are now back home and Jay is well, alot of people have commented on how Jays posture and legs seem alot better. The flight went well a few delays, we were really tired when we got home. We are now getting ready for Christmas.
December 21st, 2007
Jays last day of IV today, he will be happy, no more lying about for hours. Jay is very well just a bit grumpy but so are the rest of us. We are taking Jay out tonight to see an acrobat show, I think he deserves to get out after all he has been through. We have started to pack, we are all struggling to get everything in our cases after buying our christmas presents.We have met some really nice people here, some people are so kind.
Only 2 more sleeps until we come home.
Thanks to Cheryl, Sam, Gemma, Carly and the kids at the Out of School Club for Jays Christmas card, he received it the other day.
December 15th, 2007
We are now near the end of our stay, this is the last day of Jays therapies. We went to physio with Mandy, as normal Jay didn’t want to co-operate, Grandma came along to camcorder the exercises so we can carry them out when we get home. We did the same for OT and for TCM. Jay has really had enough now and is ready for home, he can’t be bothered doing any exercises and is getting a bit naughty at times. We are all very tired and I just want my own bed, only 3 more days and counting. This has been an experience I wont forget, lets hope the stem cells grow over the next 6 months as they are supposed to. The Doctor said they are like seeds and the medication Jay has to take will help them grow. Also seeing how some people live here, we don’t know how lucky we are.
December 15th, 2007
Jay in good mood today. Jay missed PT but went to OT and TCM. Jay seemed to use his voice more today, trying hard to pronounce words. He repeated three times after Lily saying ’say Hi’ very clearly, you can imagine the joy Lily and Grandma felt when he said it not only once but three times. Nicola and Julia are away to the Silk Market to check the new suit Nicola is having made. Jay fell asleep at 7.00pm not sure if he is down for the night, he may waken and be full of life later (hope not).
December 15th, 2007
Pleased to say the operation went well, no complications, Jay slept through his 6 hours and was in good humour when he woke, yipee.
December 12th, 2007
Julia had Jay today, he was in a really bad mood, he wouldn’t do anything for his therapies or for Julia most of the day. We have noticed Jays eyes seem to be very wide like he’s staring alot, I have asked other patients here and some others had it also.It’s my birthday today, I received some season greeting cards as mum and julia couldn’t find any birthday cards. I went to the silk market with Shirley where I ordered a taylor made suit, made of cashmere, if it is nice I will order some more. It was good to go shopping with someone who speaks Chinese you seem to get things a good bit cheaper.
Jay has his third stem cell injection tomorrow, lets hope it goes as well as the second one.
December 11th, 2007
Nicola spent the day with Jay and trying to tidy the room up as it is very difficult with 4 in a room with all the suit cases and everything when you have nowhere to put them. Mum and Julia surprised me with a birthday cake (today because of the people going home tomorrow whom we have got to know) so we could share with them all before they left.
December 11th, 2007
Today Jay and Grandma on our own all day. Nicola and Julia went off again to Silk Market and Jay and Grandma escaped from the hospital. We went for a long walk down the small streets with all the locals with their little shops and loads of fruit and vegetable stalls. Again very impressed with their friendliness and their happy content way of life, always speaking in their best english to try to make contact. Grandma found a type of park where the locals go to fly their kites and their children playing without traffic around. Jay can get out of his wheel chair and walk freely without fear of him getting knocked down or tripping up on anything. We returned and spent the rest of the day between the computer room and the bedroom. Making conversation with other patients and relatives at the hospital. Listening to their stories, very interesting and sad as some of the people who went from strong people to people who can no longer function properly. Jay went to bed about 9.30pm early for a change.
December 11th, 2007
Nothing different apart from Jay went back to PT and Nicola and mum went to Pearl Market and when we were there Nicola bought some wigs and when we got back we had a wig trying session with Jay, Julia, mum and one of the patients Steve and had such a laugh it cheered us all up and took away the menotony of the hospital day to day routine. Jay had his picture taken with Shirlene, (one of the nurses) wearing the long wig and if we can post it on the blog we will do so, so funny. All went to bed tonight with a smile on our faces.
December 11th, 2007
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