Grace’s Blog

I’m not counting today or friday when we travel to beijing or Saturday because that’s the day we’ll be home and that means there’s only 3 days to go.  Yeah!!

Not much going on here and not much to report.  Yesterday was our day off and we went for a walk, it only took us 3 1/2 hours.  We walked to the big shopping center and when we got there it was that busy we walked back.  There was people everywhere  and not even anywhere to stop for a coffee.  There is no such thing as accessible china, everywhere has a minimum of 2 steps to get in and with all the food Grace is eating and the weight of her wheelchair i haven’t got the energy.  I went to the bank on Thursday and saw there was a wheelchair ramp which was a pleasant surprise until you go up it and along the front of the building which then has a pillar sticking out that reduces the walkway to about a foot wide.  So what i actually had to do was take the wheelchair down 3 steps then up three steps just because i used the ramp.  The u.k is nowhere near as accessible as it needs to be but at least at home somebody will help you up the steps, here they just watch you.

Grace was tossing and turning most of the night and trying her best to jump out of bed.  She’s in a hospital bed with the bed rails but somehow keeps on managing to get her head through the gap and threatening to jump off.  I’d let her if i didn’t think she’d be up for the rest of the night then.

Friday night was pizza and movie night.  Not sure what i watched but it was rubbish anyway.  Pizza was nice, Grace allowed me to have 2 slices then polished the rest off herself.  I’m lucky she doesn’t like salad so i had something to eat.  Yesterday’s sunday lunch was KFC and she ate my burger bun!  The 1st day she’s back in school i am going to sit down and eat a whole meal to myself and then tell her about it when she comes home.

With yesterday being our day off she got to relax and spent a llittle time on the floor.  She was desperately trying to crawl but couldn’t get her big fat belly off the ground.  If she keeps eating we might have to get her some wheels fitted like they do to tortoises.

She’s just had her i.v put in and we’re waiting for her turn for the spinal and then it’ll be a quiet day but hopefully not too quiet as i’ve only got 1 more book left.

Hi all,

We’re good here and just sat down watching the t.v.  Not sure why as there’s only 1 english speaking channel and loops the same programs all day and then for the rest of the week so we’re now very knowledgeable about cashmere goats from watching it 3 times.

Grace has been full of beans today and has relished the attention of 2 therapist in both her sessions.  This afternoons was the most successful if a little giddy.  While doing her exercises the therapists keep asking her to lift her head up to which she answered today No! which then set the therapists (only young girls) into fits of laughter which Grace loved.  Encouraged by the laughing Grace continued to say no everytime they asked her.  You’d think this would get boring quickly but the 3 of them thought it was fantastic, i felt like matron in the corner looking over the top of my book in exasperation.

After therapy we got to speak to Michael and Rose on Skype which is lovely even though it reduces me to tears when we hang up.  Rose looked like an angel in the clothes she’d picked out herself but i know very well she is leading Daddy a merry dance.  Her behaviour has been affected with us being away and she wont do anything for Daddy and especially hates going to school.  She loves Nursery and they spoil her rotten but getting her there is hard work.  I’m sure once i’ve been home a week she’ll know how easy life is with Daddy.

Grace had Acupuncture this evening and although she cried she was in no way as bad as last time so i’m going to take it one session at a time and see how it goes.  You can see how battered and bruised she is after though.

Dinner tonight was Sweet & Sour pork which was a surprise.  When i’ve had it in China before it is totally different to the u.k vinegary version but this was quite similar.  It was lovely and nowhere near as overpowering  as the ones at home, something i would never order.  As usual Grace loved it and ate most of it leaving me to lick the bowl.  How she’s so thin and i’m not i don’t know.

Aisling- Dumplings are little packages filled with meat and veggies and then either fried or steamed.  They’re a little like Ravioli.  If we have any more i’ll take a photo, they look revolting but taste nice.  When you next come over we’ll go to china town and i’ll make you eat some.  What else are evil stepmothers for!

Uncle Matt- i’m pretty sure they’re nothing like Great nanna’s, no suet and lard here.  But the thought made my stomach churn as well and i never had to eat them.

This evening there was another storm but it only lasted about 20minutes.  I tried to get a good picture of it but how i thought i’d do that on my little camera?  The picture is from our living room window and was a bit rushed just in case the mosquitoes started coming in. 

Hi all, sorry for the delay but i’ve been without internet access for 2 days so lost contact with the outside world.  Everything here is fine and Grace seems to be returning to her usual self.  I’ve got peace and quiet today as she’s spent most of it sedated for the spinal which is good seen as yesterday all we did was fight and argue.  How she argues without saying a word i don’t know but she certainly knows how to wind me up.  Anyway she’s fit and healthy and taking everything in her stride.

Last night was a bit of a late one as we had heavy rain, thunder and lightning.  It was very loud and very bright and everytime the thunder went so did somebody’s car alarm.  So it meant myself and Grace we’re sat in bed waiting for it to pass.  Grace wasn’t bothered at all even though some of them were so loud they made me jump.  Must be all the dumplings she’s eating making her lazy.

Acupuncture yesterday was very bad and i’m considering cancelling it for the rest of the trip.  The distress it’s causing her must be outweighing the benefits.

grace now seems to be cooperating more during rehab but is definitely more responsive during O.T.  Whether this is due to the therapist, the room or the time of day i’m not sure.

I’m starting to see the end now so hopefully the next weeks posts wont be full of gloom and me moaning.  I’ve found this trip very hard and have been very homesick which has made me incredibly critical and irritable (even more than usual).  If i don’t count today or the day we leave the hospital it is only 8 days left.

We had Dumplings again today for dinner and as Grace is a bit out of it she let me have more than 3 this time, so she’s not the only one feeling a little lethargic now.

Going to try and get an early night.

Thanks for all you’re comments.

leanne & Grace

Hi, today was our day off and we went to the Botanical Gardens.  It was huge and very nice but not what we expected.  I thought it would be lots of flowers and exotic plants but is instead more what i imagine Central Park is like.  It has a big lake with lots of little ones attached, a fairground, a museum and lots of places to stop and eat.  We spent a few hours there and it was very warm.  Poor Grace didn’t get to see anything as i wouldn’t let her from under her umbrella and it’s uv protection.  The museum wasn’t very enlightening as there wasn’t a word of English in there but it was still nice to see.  We escaped from there quite quickly as there was a very helpful man trying to help me over the steps with Grace until i tutted alot and shooed him away, he was useless.  It was very hot so i don’t think we even saw half of it but it was still a lovely day that has brought me out of my homesickness a bit.  Just being able to have a conversation with somebody that understands you was wonderful.

When we returned Grace fell asleep on the sofa so i was banished to the bedroom for a nap myself.  Grace’s sleep has improved alot since we’ve been here and i have given her no Melatonin for a week.  I have been putting her in her bed and walking out and just pulling the door to, she can still hear me pottering about but just chats to herself and then drops off.  A huge difference to her screaming at home.  This has all worked well until last night when she was happily chatting to herself for hours, when i came to bed she was still awake and i dropped off  before her.  I don’t suppose there’s many 5 year olds that put their mummy’s to bed.

We had dumplings for dinner this evening and they were lovely and we have enough for another 2 days even after getting a half portion.  Grace had big shouts of more when i wasn’t quick enough to shovel them down her neck.  Oh i forgot to tell you about the pizza! It was a pleasant surprise and came with a big salad as well which i’d forgotten about.  It was nice to have something different but will be sticking to my local food for now, might treat myself next saturday with a movie and a pizza seen as i get to lie in on sundays.

Tomorrow and Tuesday are the usual routine and Wednesday is another spinal.

Siobhan you are definitely you’re fathers daughter, when my fuel light comes on i’m not allowed to fill up for another 3 days, regardless of my mileage.  But i’ve never yet run out so not had to put the filthy looks (& language) in practice.  At least you’ve got to spend some time together.

Sorry for the delay in the post but i haven’t had much to say or the energy to make anything up.  Grace is fine and sailed through her 2nd spinal.  She had this one in the morning so i didn’t keep her hungry for too long this time.  I was with her for the anaesthetic and have come to the conclusion Chinese doctors don’t understand dirty looks as one of them got a lot! next week i will just chuck him out.  He didn’t do anything particularly bad but you would think when they are waiting for somebody to go under (she was fighting it a lot) he’d be quiet, he wasn’t.  Anyway she was eventuually asleep and i left them to it.  All went well and afterwards i have 6 hrs of monitoring her I.V. pulse and O2 levels which as normal is a boring job as they all stay the same.  They reduced the amount of anaesthetic this time and she has been much better although not quite herself.

The cleaners came in with the vacuum cleaner on Thursday (we’ve only been here 2 weeks) and it was like they’ve never used one.  I am not the best cleaner in the world and quite often have to ask Michael where we keep Henry but this was laughable, i’m hoping to sneak into the cupboard tomorrow afternoon and do it myself.  The cleaners are very pleasant but i am unsure of what they are here for.

My Irish neighbours are going out sightseeing tomorrow and have kindly said myself and Grace can come with them so it will be nice to get out and hopefully find some souvenirs.  I have booked a night in Beijing on the way home within walking distance of Tian’anmen square and in the middle of  snack street that has a night market so it should be a nice break on the way home.

This second trip is dragging alot and i am ready to come home now.  I think Rose is struggling too as her first words to Michael in the mornings are that she doesn’t want to go to school.  Michael is setting skype up at home as i type so hopefully when she can speak to me every morning it will make it a bit easier on her and Michael.

Grace is moaning so i best go.

Hello, another quiet day here today physio and o.t went fine although Grace is not responding as well as she does at home.  She doesn’t understand what they want her to do so just gives up, i could do with Kristi here to give her a poke in the ribs and threaten her.  She seems to enjoy the massage though and is getting quite vocal when they attack her with the lolly sticks.  The head of rehab is great and is very interested in western bodywork along with traditional chinese, she has just been to our room armed with a memory stick and loaded my computer with loads of info on positioning and feeding and also said she is going to try and get some medicine for Grace’s wart which is great because i’ve tried to get rid of it for the past 6mths and failed.

Grace coped with acupuncture well today and only cried at the last one which goes under her chin.  I don’t think she likes  her doctor anymore though as she always gives her very suspicious looks and gives her no response to the doctors attempts to make her smile.  Although thats not totally unusual over here this time, i think she must be alot more aware that she is away from home here as there are none of Grace’s usual smiles and kicking when anybody comes in, she’s very subdued and aloof.  Or maybe it’s just all the time she is spending with mummy rubbing off.

The internet here is very slow today and it meant my skype would only give me every third word of the conversation and even just catching up with the news is painfully slow.

A note on the blog- some posts have to be approved by me so will not show on the site automatically and i think there is also a delay on some posts with the chinese censorship.  My american neighbours have told me how to put photo’s on here but it means compressing them in a computer file first and then uploading them.  I haven’t got the time or patience so it will have to wait till i go home.

Sian- if we followed every food scare they put in the media we’d be very, very thin.  I’d quite happily keep pigs in the garden but i think you’d name them and then we’d be stuck with very big, smelly pets with a big appetite.  No photo’s till i get home.  Enjoy your holiday.

Friday is Grace’s second spinal and tomorrow is more routine so i probably wont post again till friday. 

I’m trialing pizza from OK pizza tonight so i’ll go and await my delivery (pizza, chiken wings, salad & drink £4.60 incl delivery) let you know how it was on friday.

Take care

Leanne & Grace

Everything is fine here and routine resumes today.  I was not kept up all night surprisingly and feel quite refreshed.  Whatever they gave Grace must of been quite strong as she woke up around 9pm last night let me force some juice down her, messed with 1/4 of a fairy cake and was fast asleep by 10.45pm.  She slept all night until the alarm clock woke her at 7am.  All day she has been very lethargic, very floppy and off her food.  She has drank well though and i’m told she’ll be back to normal tomorrow.

It’s been a cold and wet day and i’ve spent it shuffling round wrapped up with my slippers on.  It’s amazing how you get acclimatised so quickly because it’s actually been 29c today and at home i’d be huffing and puffing saying it’s too hot!

It’s been a slow news day today and i haven’t got much to say.

Speak to you all tomorrow

leanne & Grace

Today is Michael’s birthday so myself and Grace have been singing Happy Birthday to Daddy all day, the rest of the ward must think we’re insane.  Anyway Happy Birthday Michael.

It’s all very quiet here as Grace was anesthetized at 2.30pm for her spinal and is still sleeping peacefully 5hrs later.  It’s taken  a lot of the stress out of keeping her lying flat for 6hrs but i will be kept up all night by a very hungry and wide awake little girl tonight.

The day started off as a bit of a drama but has steadily got better and will i’m sure deteriorate as the early hours approach.  At 8am Grace had the numbing cream on each of her hands and the point on her spine, (i’m not a fan of the cream but thats a discussion for another day) at 11 o’clock there is still no sign of anybody coming to but her canula in or making arrangements for her spinal.  A little while later we find out Grace has been put back to this afternoon and wont be seen till 2.30pm.  At this point i’m feeling very sorry for Grace as i’d starved her in preparation for her spinal, 2 jam butties and a big gulp of apple juice later and i think she forgave me.

The whole process here is very different from last time and again has plus and minus points.  Here unless you are a high risk case they conduct your spinal in your bedroom, after sterilising the room with a big light before hand.  This has the benefit for the parent of not seeing your child rolled into a strange room with wooshy star trek doors but has the nagging thought of it just being done in a bedroom.  In Grace’s case they got the head man from paediatrics up to do her anaesthetic and the head of stem cells to do the spinal, 2 ward doctors and 3 nurses, she was in good hands and there wasn’t a word from her.  Last time she had spinals in Hangzhou she was only sedated for the spinal and the 6hrs  after were frought with keeping her amused, here the doctor said she could wake up from 4 hrs but even that is a big help.

Tomorrow is back to her rehabilitation routine but how successful it is will depend on how she sleeps tonight.  Hopefully todays rain will of lifted and we can have a little walk.  We’ve been stuck in for the last 2 days and fresh air, or polluted air, is needed.

I’ll go know and see if Michaels picked up his birthday present, being the loving wife i am i said he could have a trailer for his birthday and then left him to pay and pick it up himself!

Keep in touch

Leanne & Grace

Hi all, Grace has just gone to bed and i’m trying my best to stay awake.  Today has been fine with physio and O.T although Grace has been a little stiff all day.  I’ve been very tired today despite 10hrs sleep last night and Grace has been off her food so i think the travelling and everything else is catching up.

It’s been a bit cooler today, low 30′s, so we went for a walk to the supermarket.  The translators and nurses always want you to take a taxi but it’s only a 15minute walk.  I’ll take some photo’s next time we go and post them when we get home.  Anyway it was a nice walk and we stocked up on comfort food.  We bought pork, onions, garlic and spuds to have a bit of a fry for brunch tomorrow and baked beans for Grace so she could have beans on toast for her dinner.  These are the only thing i haven’t needed to force down her all day so she must be a bit sick of chilli’s and noodle like me.

After dinner we got to see and speak to Rose & Michael on Skype which was great as i hadn’t seen Rose in over a week.  I think she’s doubled in size and learnt 20 new words.  I was glad she wasn’t upset at seeing me  and she was quite happy destroying Daddy’s office and going to paint Tony’s nails with a marker pen.

Things are ticking along nicely here, the smell of the carpet is almost gone, i’m now happy i can get out to the supermarket and Grace has slept in her own bed for the whole night for the past 2 nights.  Tomorrow is our day off even though the doctor is popping in to do Grace’s Acupuncture, let’s hope she can sing twinkle star this time instead of tinkle star.  It doesn’t look great giggling when your daughter is having needles stuck in her.

Tomorrow will be a quiet day so i might not check in till Monday, when Grace has her 1st spinal.

leanne & grace

You’ve all asked a few questions so thought i’d take time to reply to them in our lunch hour.  Grace has just had her noodles and i’m building myself up to have last nights leftovers.  The food here’s great, especially now i’ve got the missing 4 pages of the menu, before that it was jellied fungus or glutinous rice balls.

To Sian, Glad the bloods went well and hope the results don’t take too long but it is the Maelor so don’t hold your breath.  Your very right we have got a great support network, you’ve all been great and the messages and knowing Rose is O.K (&Michael) makes it all alot easier.  However i didn’t have Chicken Pox Grace and Rose did so i’m not taking the blame, it’s there’s.  Ha!

To Uncle Matt, The smell is not disinfectant it’s POO WEE STINK & the ice-cream was vanilla, didn’t risk anything else incase it was pig trotters or something.

To Auntie Polly, i will buy you shares in Windolene for Christmas and if we visit more often you should get a good dividend.  Thanks for the offer of the relief package but we really have got everything we need here.

To Mum, don’t know what you’re talking about Rose loves mornings (She gets that from me!!), but i am glad she was ok for you and i’m sure she’s now thouroughly spoilt.  Thankyou.

To Siobhan, I wonder if i could set the words myself?  I could have you all typing in rude words.  I read everybody’s comments to Grace and there was a big smile when i said Fatty Boom Boom, i wonder if she thought i was talking about Sinead!  Enjoy your time away, it’ll be great for you to see Gary if only in the evenings.

Think that’s all of you, but i”ve probably missed somebody.  Anyway i’ve talked enough about you lot back to ME.  Today is Physio, Occupational Therapy and Acupuncture.  The day started with Acupuncture at 8.3oam and if it was me i’d be in a foul mood all day but Grace just takes it in her stride.  The acupuncture here is different instead of leaving the needles in for 15-20 mins they just jab them in and out quickly.  It must be really sore but if the Doctor sings Tinkle Little Star she doesn’t cry.  They only do 4-5 points a session to get her used to it but i’d say she never will, they think she is scared of the needles but anyone can see it just plain hurts.  Then it’s off to Physio, it’s very passive and massage based and alot less intensive than she is used to.  I still do her stretches everyday in the room and a little standing work so hopefully she wont get bored.  After lunch it’s O.T. which is more massage, this time very deep massage to the back neck and face, exercise ball work and then they attack her with frozen lolly sticks.  It’s actually tongue depressors wrapped with wet cotton on the end and then frozen which are then rubbed all over her neck, cheeks and mouth.  It’s supposed to stimulate her swallow reflex.

After that it’s a quiet evening and all repeated tomorrow.  Sunday is our day off.

leanne & grace