Posts filed under 'cp'
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
Our first restaurant meal
Hi everyone,
Happy 30th Anniversary Sandra and Keith, and many more to come!
Nothing much is happening here. Jack got through his 4th injection the same as the others. The physio seems to think that his tone is less and I agree that he has been a bit more relaxed the last coupl of days. The docs see this as an improvement, but I’m not convinced as this is what Jack is like. He goes through days of tightness then relaxes. He is also getting used to Daisey so is relaxing more with her.
All of the American children have gone home over the last few days. I think that their school term starts again soon. We met some really nice mums and it would be great to stay in touch to see how the kids progress. The Canadian men, Cameron, Brian and Bob, left yesterday too, they were lovely. Andy enjoyed some male company as they met him on a few occasions for a drink at the hotel. Cameron was here having treatment for a spinal injury that occurred approx 20years ago in a car accident, and his outlook on life is more positive that most people I know. They’ve now gone for a three day break in Hong Kong before travelling home,( sounds like a good idea).
They have mostly been replaced bt Hungarians, so lacking a bit of English speaking company. We’ve still got Scott next door from England with his friend and thier are two American couples , the Irish lads and three Italian lads. They’re so funny the Italians and so friendly. They’re always chatting the nurses up! The Irish lads are seem quiet but really nice and polite.
Yesterday, we got out of the hospital and went to the hotel ,then across to a new supermarket that Andy found. Jack loved it . It was packed with people and kids and lots of people kept bringing their kids up to say hello to Jack. (not that he would smile back!) Then we went into one of the restaurants in the hotel, for the first time. We were the only one’s in there but Jack seemed impressed with the place and it was lovely just to sit and have a steak and a glass of wine. (My first alcohol for three weeks!) Jack was impressed with the big basket of different breads that the waitress brought out, especially the brown bread that he thought would be chocolate flavoured, but of course wasn’t. After the first bite he decided to try some different ones!
Andy is still going to the Gym every night (and no Jim isn’t the bartenders name as my sister asked)
I’ve found out that the market that Andy went to and said was just full of “tat” was in fact where you get all the silk pyjamas and gifts from so – he’s on his way back there tomorrow to pick up some gifts. Lord knows what he’ll come back with! I’ve told Zach that he’s in charge and to guide him in the right directions!
Just for infromation purposes the treatment here is the same price for everyone no matter which country they come from ,it’s in $us. (That’s info for Martin who I don’t know if got my Email.)
Anyway im going now.
Jack has his next spinal on Wednesday.
Bye for now
Jane, Andy and Jack x
July 30th, 2007
Hey
I hope I’m on royalties with the Telegraph for all the extracts from my blog being printed! I’m having grand notions now – I’m thinking of writing my first novel when I get home! Lol.
I must correct a couple of things “quoted” by Kirshner, maybe she got mixed up but Jack isn’t having acupuncture and he’s not had any “minor” improvements yet that I’ve seen but she is right- its early days yet.
Andy’s bought some gym gear and started going to the gym at the hotel at nights (see he’s not really missing the beer at all boys!) although I think he ends up in the bar afterwards. He tells me he’s the only one in there most of the time,but the other night there was some sort of caberet night going on and with only about 10 people in the bar, he got dragged up for a “who can down a pint the fastest” contest with a German, Chinaman, Englishman (starting to sound like a joke) and chinagirl. Who won?
Go girl power! The girl of course! Down in one.
Jack’s doing OK. He’s mostly his happy little self. I often ask him if he loves mummy, daddy and go through the family, to which he smiles or giggles his response. I did this last night and got to the staff here , Wendy(smiles), Zach (smiles), Daisey (smiles), The nurse (a twitch in the corner) the Doctors (deadpad face!) no way was he going to smile at liking the docs! Lol
It didn’t help the nurse cause either that I bought them a couple of tubs of chocolate and took him out with me to give to them. We returned to our room and he his bottom lip right out at having to give away the choccy, then burst into tears. I had to show him the couple (alright-six!) of mini snickers that I’d bought for my evening treats, to convince him we hadn’t given all the choc away! He cheered up , smacking his lips together in anicipation.
While I rememer it did say in the Telegraph about Jack being strapped down on the standing table and sounded like this was where we gave him his injection . If I typed something misleading I appologise. The standing table was something we tried him with in the morning and haven’t tried since! I’ll wait untill we get home and he can go in his standing frame , which he loves, then.
He’s asleep in his bed/cot next to me at the moment and has his 4th injection tomorrow – a spinal.
I’ve been on the stemcellschina site and to Shonia’s blog, who is a girl from UK in Beijing, having treatment for her CP by a different company/hospital. She seems to be having great improvements (for parents like us any improvement is great for your child) I’ve told them we’re thinking of them and watching closely.
Hey, Jack actually smiled at a doctor today. I saw them coming so I scooped him up from the bed where he was having physio and only two came in,(maybe they’re learning – two’s company……..) and one of them gave him a little steel knee hammer to hold. I did a “bang,bang” with his hand holding it and he cracked a smile at the doc!
I’ll tell you who he sreams with dlight at, our two cleaners who come in every morning and say hello with big grins. He watches their every move and loves it when they stop any talk to him in chinese. Actually, they are loveley ladies, they told Daisey this morning that I was beautiful. Andy seemed to have some sort of snorting coughing fit just after for some reason!!!!!!
On that note I’m off now, it’s 9:20pm and life gets going early in the mornings, need my beauty sleep.
Love to all
Jane, Andy and Jack x
July 26th, 2007
Just a note to say Andy’s getting lots of texts off you all, thanks, he’s been trying to reply but for some reason neither of our phones will send texts, we’ve tried and they’re all coming back fialed! We’ve tried to sort it with T. mobile but to no avail.
July 24th, 2007
We CAN NOT get Jack into the physiotherapy room for his standing bed therapy! As soon as we enter the area he won’t have it. There are lots of people in there at the same time and we tried to lie him on the bed on monday, strapped him in and stood him up, all while he was having a paddy! Then the doctors turned up to compound the situation. Everyone is finally in agreement – he doesn’t like the place! We got him out and calmed him down and now I have to keep taking him down for walks to pop in and “play” and say hello, try to get him used to going. ( It’s not working yet!!!)
He had his IV yesterday, which didn’t go too badly, once they’d got the IV into him hand. He wouldn’t smile at any of the nurses though that kept coming in to check on him. He just curled his lip up and grunted at them. I thought being here would help with his phobia of doctors but its making him worse. The doctors come in every morning and he’s still screaming at them, in fact he was doing his physio yesterday and I said to Daisey, that the doctors sound like they are on their way. Jack understood and started looking at the door and crying before they even arrived! When he’s crying he gets all hot and bothered and his chickenpox scars all glow red, well the doctors started panicing thinking he was having an alergic reaction. As soon as I said “chickenpox scars” they calmed down. “Ahhh, chickenpox!” nodding to each other, “Phew”.
I actually went out on my own today. I went to the clothes store but decided not to walk as soon as i got outside! I got in a motorised rikshaw (they were all fighting over me) and went for a nice bumpy ride for about 35p. I wasted my time there though there was nothing in my size! The people here are so slim and small (well thats my excuse!) I rikshawed to the supermarket and then back to the hospital. Its definately the way to travel. Ive told Andy to do it, save that sweaty walk back when he goes food shopping, but he says he needs the exercise. (Really he doesn’t trust his life in their hands!)
It’s Jack teatime now so I’ve got to go.
love Jane, Andy and Jackpot
July 24th, 2007
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