Add comment March 6th, 2008
Posts filed under 'cp'
7 months after Stem Cells
Hi
It’s been ages since I’ve written on the blog. I was hoping to be able to write that Jack has had improvements but after 7 months I’m sure that he has not.
Socially he has got a lot better but I think that this is due to the fact that he is full time at school and meets lots of different people. He eats a little better and is more relaxed most of the time with no overbiting on the spoon, but again he was showing improvements in this before going to China. His teacher from last years class seems to think that he has more range and control over his arms/hands but I can’t see it at home. Maybe I was expecting/hoping for bigger improvements and can’t see the small ones- I don’t know -but I can’t give credit to the stem cells if I’m not convinced!! I don’t know if we will give it another go in the future, Jack may respond totally differently to the treatment in a few years or perhaps we could try cultivating his own stem cells in Bejing, but you have to be there for longer!!
Anyway, he’s doing well at school using his yes and no cards to communicate and switches so far. He loves going to school on the school bus which collects him at 8:15am and we had no problems with waving him off from home when he started. He just loves all the attention he gets from the other kids, all older than him. He’s got his supported walker at school now so he can get down to his friends level at playtime.
At home I’m still struggling to give him an hours exercise every day. Hes had some botox in his legs 4 weeks ago which has made a difference to the tightness of his muscles in his right leg. This leg sweeps inwards causing the top of his leg to start to come away from his hip socket. We are trying to correct this with his posture and stretches.
Christmas he enjoyed more than ever this year. I made a big thing about it for weeks and he was really excited christmas day, though it took for ever to unwrap his presents because he wanted to try grab the paper and pull (with our help) every bit of paper!!
Best wishes to everyone
Jane
Add comment March 6th, 2008
Hello world!
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1 comment November 3rd, 2007
jacks first school photoseven weeks later
Hi everyone,
Sorry its taken so long to update. Jacks got back to school and he is full time now and loving it. No tears anymore when I drop him off and his days are action packed. I find it harder to find the time to do an hours physio now, but we do what we can. He comes in from school wanting his drink and food immediatly and eats so much! Hes eating well at school too, now he’s got used to all the children together in the dinner hall. Travelling well on the bus home even though there were lots of strange new faces and next we will try to get him on the bus TO school. See if he gets too upset at LEAVING home.He keeps surprising me so fingers crossed.
As for improvements, nothing physical that I can see I’m afraid yet, and as time is passing I’m getting my negative head on that nothing will happen now! Mentally, he does seem to know everything that is going on and never misses a thing, eye points to what hes trying to say but he was doing this before China so maybe there is not a lot TO improve on that side. He just needs to be able to control his movements more which is not happening.
He’s happy though!
Do we regret going to China – not in a million years!
Would we go back? Maybe not to China but somewhere a bit closer when possible, and maybe not straight away. I know stemcell research has got so much further to go and I would like to hope that we have another jump foreward soon in knowledge, which can only come about by our governments allowing the research, which we all know!!
I keep trawling the internet for updates.
Anyway, great news for Rylea the little girl that we was in China with who was blind. She was seeing some light in China and since being back she now sees her mums face and her Dr says she now has 20/400 vision ,fantastic news after all these years for her. And well done Dawn for not giving up hope on your gorgeous little girl! I hope she has more improvements when she goes back to China.
If anyone has any questions you can contact me at jane.whitelock@hotmail.co.uk
bye for now
Jane Andy and Jack
Add comment September 26th, 2007
Back Home
Hi everyone,
The last day in China was a bit emotional really, which I didn’t think would be. Everyone was so nice coming to say goodbye. We got some flowers and biscuits, chocs and fruit for everyone to share and one of the cleaners (who were Jacks favorite people) came up to me and gave me a lovely message that someone had written for her in English, saying “Hope you have a safe journey home,all the best to you,hope all your dreams come true”. I didnt expect it, so it made me cry! I gave her a hug and said thank you, then she came into our room just before she went home for the day and gave Jack a kiss and cuddle and said goodbye (in chinese) . This set me off then when I said bye to everyone else and then Jack started getting upset because I was hugging everyone!!
I spoke to one of the Hungarian mums during the day and got a quick update on her 9 year old daughter. She had been to Shenzhen last year with her and she has mild CP with learning difficulties and her eyesight was -9 before going to Shenzhen. After they got back (approx 3 months) her eyesight improved to -2 and her understanding had increased, her memory of people and questions from days before had improved and her aggressive attacks had just about gone. She told me that most children see their improvements in three months or so, because I said I hadn’t seen any improvements in Jack yet.
We got Jack to sleep early because we would be up at 4.30am the next morning, but you know what its like, neither I nor andy could sleep well, Jack woke up at 3.30 am and wouldn’t go back to sleep, so that was the beggining of our tiring 24hrs. 2 1/2 hrs by car to Shanghai, 2 1/2 hrs wait at the airport, 12hrs in flight (which was great, the air crew really looked after us and made such a fuss of Jack) then getting through customs and into Marks taxi for the last leg of just over 3 hrs.
It was great to get back to a lovely clean fresh home(Mum had been busy while we were away). Mum had just been to pick up Matty from footy training so it was great to see them a few minutes later. Jack was so tired though , he’d only slept for two hours on the flight, so he was a bit weepy when he saw them. We all got to bed about an hour later and tried to catch up a little on the sleep that we’d missed.
It’s taken three days but I think we’re getting ther now.!!
We had the Scunthorpe Telegraph round to take some pictures and ask a few questions on Thursday and there is a good write up in todays paper (with pictures of ME and Jack which I tried to avoid, but they were good ones) Then just as they were leaving Calender arrived to interview Andy with Jack, thats on today. Andys been talking to Lincs F.M. and Look North and Radio Humberside today. Just to update everyone and tell them that we’re home and hopeful.
It’s just a waiting game now, I just hope that he has something to show for everything that he went through however small an improvement it may be!
I’ll keep you posted.
7 comments August 11th, 2007
Last day
Jack is fine and dandy, although when he see the nurses bring in the IV later he will change.
Andy and I on the other hand are not fine and dandy! Andys had a bad headache and dizzyness yesterday and today and ive got accute stomach pains and dizzyness! We’re just hoping we’re better for 5am in the morning when we get up to start our journey home.
We’ve just got to get some flowers for the staff and Jack has his blood taken again before the IV to compare with blood when we arrived. Compare what though I will find out.
I’m tired too because Jack took two and a half hours to get to sleep last night. he just kept shuffling round the bed and getting stuck! Then he was awake again at 11.30 for another hour!
We are so looking forward to our own bed now!We’ll take a few more pictures before we go of everyone too.
I will keep this blog up to date when i get back on Jacks progress.
Jack with Linda
I must end now with the biggest thankyou to everyone that helped us to get here, I can’t name everyone but you all know who you are. Thank you so much.
Thanks also for all your comments and support while we have been here, they’ve kept us going.
Bye for now
Jane, Andy and Jack xx
1 comment August 6th, 2007
Friday 3rd a free day
Hi,
I tried to write a post yesterday but I think this laptop is on its last legs! Its ready for an overhaul when we get back, it just keeps freezing in the middle of something so I’ll try not to be too long today.
I’l just mention Jacks last spinal injection, thank goodness it was the last one of those. It took three goes to get the IV line in by which stage he was a screaming wreck , never mind when they carried him into the treatment room. He was a bit calmer for being carried but as they wheeled his bed in behind him he caught sight of me and that set him off again. This upset me , obviously. And he was a lot longer to calm down after this time. Ah well, its over now. Just one more IV line to get in him on Monday. I hope Kitty does it , she was the one who came in and took over on the third attempt and with no messing got it straight in. She must be an old hand at it.
There was a Scotish man came visiting the other day. He’d been here previously and had treatment for his Ataxia and told andy he got his speach back and could walk a lot better now.
Wendy, who is Beike staff , mentioned to us today that Beike are looking into opening in a hospital in Romania, hopefully within a year. This would be great for Europeans, the flight itself to China is such an ordeal! We’ll have to wait and see.
Well to say we’ve got a day off from any therapy we’re not doing a lot. We’ve masteres the chinese dinner menu now and know what we like and not. I’ve found a delicious chicken with cashew nuts and the eggfried rice is spot on. The prices are only about
1 comment August 3rd, 2007
thursday 2nd august (counting down the days)
hi everyone im only going to say a few words to give jane a break from the computer,!
first of all i would once again like to thank everyone for sending in their comments to our web blog, we are all ready for home to see our family and friends! and some good old english food (and english beer) ah.
jack had his fifth stemcell injection yesterday in his spine he was not very happy at all to say the least but he has one more to go and this one is his arm, thats on monday then early tuesday we set off for the airport (cant wait) im not saying that we dont like china its just home time! everybody here nurses doctors etc are all great and have given us new hope for jack! in our lives, for that we thank them dearly!!! any way i will log off now and let jane do her blog later on.
see you all soon andy, jane n jack!!
3 comments August 2nd, 2007
