Archive for August, 2007
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.
August 11th, 2007
August 6th, 2007
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
August 6th, 2007
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
August 3rd, 2007
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!!
August 2nd, 2007
Hi Y’all,
I don’t think The Evening Telegraph will have much to print today, I haven’t written a lot this week!
We didn’t know if Jack would have his injection today as yesterday he had the runs, but apparently it won’t affect the stemcells , only if he has a temperature. Jacks watching his favorite bit of dvd at this moment, it’s Balamory and Miss Hooley kisses P.C. Plum at a wedding. He thinks its hilarious and we keep having to rewind it.
I had to force Andy to go gift shopping yesterday with Zach but I’m sure he enjoyed it in the end. They went to Hooters for their tea and had some great food and all the waitresses thought he was a Doctor because they know that Zach works at the hospital. Zach had to explain why he was here.
Zach is leaving here on Friday to go to Beijing where his parents now live. They did live in America for 14 years but moved back to China. Zach goes to college in USA and will return there in two weeks. He’s been a great help around here for communication and help getting out and about.
We realisied that you should ask if you need to know anything. We asked a few days ago if we would be able to see Jacks MRI scan as no-one has discussed it or the outcome of any of his initial tests. We could have done with an initial sit down with a Doc after the first day of tests but as we didn’t know what to expect we just plodded along with whatever happened. We do get the morning visits from the docs , when you have to ask any questions then, but I still feel that an initial meeting with a talk about Jack, the treatment and the outcome was missing.
I’ve been reding Shonias blog again on www.stencellschina.com and her parents even have a weekly meeting with the doctor and all other international patients to discuss progress introduce each other and ask questions.
Anyway we got to look at his MRI today and tried to understand what we were looking at! The only thing we understood was that he still had a lesion on the left side of his brain and there was a vague dark patch in the centre which everyone has apparently but Jacks is a bit bigger! I think we can bring the MRI scan home .
When you ask the doc if he thinks that the stemcells will repair any of the damage he nods away and confirms that it will -yes. Hes got to say that though hasn’t he! I really hope the next few months do help.
Andy talks to the mother of the ten year old boy from Hungary, whos name is Marty. I’ve mentioned him before. When he came here in January he did not talk and only lay down, although he could shuffle around. It wasn’t until 3 months after they got back that he started talking and standing holding a walker. I’ll find out more later.
Daisey brought a prone standing frame into the bedroom to try after physio, but she started to put him in leaning backwards which Jack was having none of. I don’t even try to explain that Jack will not go into anything bacwards and would be better forewards as its hard work communicating and not long till we go home to what he’s comfortable with. But , guess what, no tears for the docs the last two days! Even a bit of kicking and laughing today. I had to sit today and watch what Daisey does to Jack with his physio so that I continue it when w get home. Linda sat and translated and got my arm to show me a movement. No-one is allowed to touch Mummy though and Jacks lip quivered and then he burst into tears! He is the same with whoever gives me a cuddle or kiss bye etc. Not even Daddy or Matty are allowed!!
Gosh I’ve just realised what time it is, the nurses will be in to put Jacks IV in him in half an hour!
Nomality is not far away now. A week today and we will be just getting up to our normal daily routine at home. Lets hope we bring some hot sunshine home with us! They’ve got far too much here. There will only be 4 weeks of school holls left and Jack will start full time at school. What will I do with my days! Lol.
Gotta go. Andy wants ten mins on the computer before Jacks IV starts,
Bye for now
Jane, Andy and JackXX
August 1st, 2007
