Grace’s Blog

Today we met the doctors on rounds during Physio.  We go through the motions of her routine and they stand round talking chinese and occasionally grabbing a limb and bend it this way and that and you don’t normally get to know much of what they’re saying.  Today however they said that you can tell that she has good physical therapy at home and that we should carry on with it.  So thankyou everybody at Stick N Step and well done!  Other than that they haven’t given us any indication of anything extra we should be doing at home so everybody at Ysgol Y Bryn will be happy to know they won’t have to go on that crash course in acupuncture!

Grace is quite lazy in Physio here and i think it’s a combination of me doing it with her and that there’s no Hungarian accents, it must be very confusing.  After physio is over time seems to stand still, the days are very long and i’d finished reading all my books a week ago but it will soon be over and we’re here for a good reason.  Michael here in 24hours and poor Nanny has Rose.

Grace is demanding food so it’s Noodle time.  

Apart from the obvious things like Michael and Rose mashed potato is the only thing i’m missing.  I’ve just made myself boiled ribs and sweetcorn and it wasn’t the same without mash and loads of salty butter. I can only find new potatoes here.

Today we had a quiet one as Grace was not her usual self.  For the first time i had to give her Calpol for the back pain from the spinal and when i removed her dressing this morning it did look sore.  All the other times you struggled to see where the needle went.  |So we went to the supermarket and stocked up for the next few days and then went for a lunch of dumplings in the local park.  It was a cool day and was nice to get some fresh air.  The park is set on the river and you can see all the locals using it, some fishing some washing their clothes and others washing their vegetables.  I got the camera out and the battery died but i will go back before i leave and take some photo’s.  It puts U.K parks to shame and is incredibly beautiful it even has a public gym with a crosstrainer swing thing, i’ll have to take a picture because it’s hard to describe.

After our peaceful lunch we came back to the hospital and Grace had a afternoon nap that stretched out for 3 hours, a good indication that she wasn’t on top form.

Tomorrow is an open page and it’s anybody’s guess where we might end up.

Grace has just had her last injection (no6) and is fine as usual, fast asleep hoked up to her IV.

I’ve just been catching up on all your comments and it’s great to know you’re all thinking of us.  It’s also quite surprising how any people have had to learn how to use their computers since we’ve been over here, even Michael knows how to get on the blog!  And thankyou Siobhan, you’ve just had me in tears here (good ones) with your trials and tribulations.  Glad the wedding planning is going well i’ll do anything i can to help when we get back.

This week is going very slow now the end is in sight and i’m counting down the days. Physio is going well when Grace is in the mood, today she tried to do everything and thats all i can ask.

On Wednesday we went to the night market which was all lit up down a dingy little alley and like most markets sold useless rubbish but it was cheap (DVD’s 78p) and i bought lots i don’t need.  Everybody was fascinated by Grace and had to come and say hello to her or rearrange her blanket or just fuss.  From there myself, Grace and another parent went to an Indian Restaurant on West Lake which had good food, good wine and belly dancing.  It was a great evening and broke the monotony of being in the hospital.  The only down point being the toilets, they were a hole in the ground so i was happy i didn’t have too much to drink.  We were like naughty schoolgirls returning to the ward at 10pm.

We have this weekend off so i’m hoping to see more of West Lake and maybe take a boat ride depending how Grace is. Then it’s just another day till Michael gets here and then home.

Going to grab my dinner now while she’s still asleep.

P.S. To uncle matt- The Duggan household doesn’t function very well without alcohol but it’d be great to see you both. 

Today my sanity was restored with the help of two American ladies, Jordan and Mr Lee.  We made a day of sightseeing and shopping that was made so much easier by having their company.

Mr Lee was our driver for the day and it was a great comfort to know he was there to take us anywhere we wanted and knew how to get us back to the hotel.  For 300RMB (£27) he picked us up at 10am and dropped us off at 7pm and drove us anywhere we wanted and gave us advice on where to find certain things.

Our day started with breakfast at Hooters, i don’t know why we went so don’t ask, which was ok if a little strange.  The waitresses are very tiny chinese girls in little white vests and fluorescent orange hotpants with not one set of hooters between them and are certainly there for their looks and not their brains.  The all american breakfast is what you would expect to get in china and halfway through the waitresses do a dance for the customers.  It was 11am and there was 8 customers.

From there we went to the Zoo which by western standards looked like cruelty.  The cages are very small and are all made of concrete with no greenery.  It was interesting to see but not something i would do again, those of you that know me will know i’m not a big animal rights activist and not particularly sympathetic to most plights but it was a little upsetting and i was quite glad Grace couldn’t see a lot of it.  The worst bits i found were a childrens ride that had little rickshaw type carts attached to Goats and they were made to carry round kids for 10RMB, and a blond bear that was so desperate to get out of it’s enclosure it walked backwards and forwards constantly in-front of the door not even wanting the fruit and vegetables people we’re throwing it.

After that the day picked up at LinYing Temple which was beautiful and the day was cooling down so it was nice to take a walk around the grounds.

Then we turned our attention to shopping!  While i was out i had to stop myself because i thought i was spending too much, i should have carried on.

 Pair childrens silk pyjamas £3.

Pashmina £3.50

Decorative Parasols £1

Decorative Fan 78p

The day came to a nice end with a drive around West Lake.  Even the most common buildings here are beautiful and everywhere is clean, no litter, no chewing gum on the floor, no gangs of intimidating teenagers outside the co-op.

We have next weekend off so i’m going to try and see a little more then.  It doesn’t seem so daunting now i know the driver stays with you and i don’t have to get a strange taxi home.

Back to therapy tomorrow with her last injection friday.  Home in 11 days.

Balls! This is my second attempt at posting this as the first draft dissappeared somewhere.

Today was Grace’s 5th injection and she’s fine although it wasn’t the usual haven of calm it usually is here.

The whole process starts 2 hours before when she can’t eat or drink anything however today this was 3 hours because the plane was late bringing the stemcells.  The lumbar puncture takes about 20 minutes and that was all normal and she comes back to the room for 500ml of IV and 6 hours of lying flat.  All the same as usual, she falls asleep after a few hours and i settle in for some peace and quiet until about 9.30pm, but today has other plans and the noise on the ward wakes her after 40 minutes.  She wakes sore, tired and very hungry.  Once she’s finally stopped crying and settled a little i tackle the task of feeding her while she’s lay down, this is solved with cake, cheese triangles and some evil looking orange drink that has too many E numbers.  she’s then dosed up with melatonin and i let out a big sigh until the endless round of temperature checks are landing down.  I can’t complain about the nurse they’re great it’s just sometimes i wish they weren’t so good and forgot us just for one evening.  I think i’ve just been here too long surrounded by people and noise, and it’s so noisy from 6am-9pm.  They even have choir practice on the ward a couple of times a week, where doctors and nurses meet in the doctors lounge in the evening, there’s no going to the pub like they do in Holby City!

Anyway she’s fine and that’s all that matters.  We’ve got tomorrow and Sunday off and i’m hoping to get into Hangzhou city and do some sightseeing, ok, i really mean shopping!  Hangzhou is set round a lake and you can go on boat trips and walk along promenades and stuff, it’s supposed to be really beautiful and it would be nice to see more of the country than just Hong Kong airport and the local supermarket.  And if i’m lucky i might find a bookies so i can put my bet on the National.  All this hangs on the weather as today it was so foggy i couldn’t see accross the road.

I’ve found films i can download off LimeWire and tonight is ‘The Number 23′ with a bowl of pork casserole, well i think it’s pork!

Today Grace had her 2nd spinal (4th injection) and once again all is fine, in fact she’s fast asleep on the bed beside me.

We’ve had quite a boring weekend with lots of fog and drizzle and didn’t manage to get out at all on sunday.

On Saturday we went to the local hotel for lunch which was nice to get out but the menu is a bit hit and miss and it’s hard to know whether you’re going to get anything good.  While we were there an american lady approached us to ask whether i was in China adopting Grace, to which i could only reply ‘no she’s mine’.  We then went for our usual trip round the supermarket and got talking to a chinese lady in the queue, who after finding out i also had a 18 month old went on to ask me which type of baby formula she should get for her 6 month old, it was all in chinese so she didn’t get much help from me!

A quick thankyou to Jane Kelly for keeping everyone at Ysgol Y Bryn updated, i just ope i don’t get the copies back with my spelling and grammar corrected in red ink!

And to Sinead, if i find a millionaire i will indeed give him a kiss, but if i get in trouble with your dad you can explain.

Grace started today with her usual routine of Physio (she did it all), Acupuncture (she h ates it) and electrical wave therapy (it’s ok).  Then she had her 2nd IV (third injection) and once again she didn’t cry when they put the IV in, even though it took them two tries, and she’s had no side affects. I’m beginning to think all  they’re putting in is weak tea.

A bit of useless info (but it might hold off the biochemistry lecture from Uncle Matt!)The Stemcells are clear and it’s the neural growth factors that give them their brown colour.  In the IV they mix the two together and in the Spinal they remove some spinal fluid to make room for the stemcells and inject straight after and give the neural growth factors via IV at the same time.

The days are going pretty quick here and the evenings go a little slower.  Once grace goes to sleep at 7 i have time to eat my dinner, have a shower and write this blog.  That takes me to about 8.15 and i’m in bed! I’m well rested anyway.

You’ve probably noticed i’m missing out a few things from the blog, 1 being any photo’s of the stemcell treatment but i don’t think anybody wants or needs to see Grace hooked up to an IV or sedated after her spinal. 2 being no mention of any improvements.  I want to see the reaction of others before  i confirm any changes because although I’m her harshest critic  i think I’m probably seeing improvements because i want them and not because they’re there.  One improvement i can comment on is that she will now let me brush and tie her hair back (Cerys from Ysgol Y Bryn will be very proud!) so she doesn’t always look like a feral child now, just some of the time.

It’s almost 8.30 here and past my bedtime.

Goodnight.

Today Grace as back doing her therapies as normal starting the day with one and a half hours of physio and an hour of accupuncture, breaking for lunch and then 40 minutes of electrical wave therapy.  Most of that went well today, her back was a little sore from the spinal yesterday so we had to adapt her routine a little and she tolerated most of it.  The accupuncture went very well and after the initial shock of having needles in her head and chin she settled down nicely, she also had a big sleep just after it and finally relaxed from yesterdays ordeal.

I spent the rest of the afternoon craming anyhting with a high calorie content down her neck as she’s lost quite a bit of weight since we got here.  She arrived with an ulcer on the tip of her tongue that was huge, she couldn’t eat or drink for a few days and she’s still playing catch up from that.  We got some chinese medicine from the pharmacy and it cleared it up pretty quickly and her appetite has come back now so fingers crossed by the time we come home she’ll have a belly to rival Rose!

We haven’t managed to get out for a walk since Sunday so we’re both a bit stir crazy and sick of the sight of each other but hopefully we’ll get out tomorrow.  The days here are too lovely to stay in even with the smog.

On anther matter Good Luck to Orla, Paul and Jon on setting out to there new life in Australia, we’ll be landing on your doorstep demanding B&B before you know it.

That done i’m afraid there’s not much else to say.  It’s pretty routine here with Physio and other therapies with another IV scheduled for friday.

It was business as usual here today, with no Easter holidays.  Grace had her second Stem Cell injection today, this one spinal, and i couldn’t have been more proud!  It got off to a bad start when she had to be woken for her IV but she coped well throughout.  After the injection she has to lie on the bed without lifting her head for 6 hours.  This has gone quite well although she couldn’t understand why i wasn’t picking her up when she cried.  I was quite grateful when she fell off to sleep about an hour ago as i’d gone through my whole repertoire of amusement at least three times, and yes this does include various nursery rhymes i don’t know the words to and playing Paddy Mcginty’s goat and the Rattling Bog on Limewire.(I hope nobody ever catches my dancing to these on film as i’d be a huge hit on YouTube.)

 So far she’s not shown any side effects to the injection, which can include a temperature, sleeplessness, screaming and jumping.

Not much more to say for today so i’m going to sit down with my Hot and Sour Soup and enjoy the peace.

Hi, if you click on Photo’s under the related links heading on the right of the screen it’ll take you to my facebook photo page.