Grace’s Blog

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.

Hi, Sorry i didn’t update everything yesterday but Grace has decided sleeping in Mummy’s bed isn’t enough and that she has to sleep on-top of me, which has limited my time a little bit!

Anyway, the first IV went really well with Grace sitting there quite happily for half an hour.  They don’t mess about with numbing the hand first here so she didn’t get upset with them pulling at her and the nurses are so good she didn’t even cry when the needle went in.  The stemcells look like weak tea and not what i expected at all, in my uneducated mind i imagined they would look like frogspawn (how they’d get that in your veins i don’t know).  After the stemcell injections it’s quite likely they get a fever, which Grace didn’t!  My little girl dropped her temp instead, and anybody who knows her will know this is unusual.  Other than that there was really no change.

 The rational side of my brain knew not to expect any differences in Grace so soon, The irrational maternal side of my brain expected miracles!  I’m really happy with the way things have gone this week, my only regret is not fitting Rose and Michael in my suitcase.

 I’ve a few questions to answer:-

No1.  No Jenny there’s no eggs but mum packed us some treats for Easter.

No2. Gary there’s no Sky Sports but there was American basketball with Chinese commentary.

No3. Gary again! There’s no ‘English Chippy’ like you find on he Costa Del Sol but there is KFC, Pizza Hut and Subway.  They do an alright Chinese Takeaway too!

Thankyou all for your comments, it’s good to be in contact with the outside world. Keep them coming.

Mum flys home tomorrow and she will be missed, she’s been a great help.  Grace started her therapy today with 1.5hrs of physio and 40mins of electrical wave therapy and is due to have her first injection by IV on friday. 

The Physio was good and Grace co-operated and many of the exercises we’re similar to Stick n Step.  The electrical wave therapy is like one of those slendertone machines that shock and contract you’re muscles and is meant to loosen her muscles.  She looked quite funny sitting there with her arms and legs twitching, she fell asleep halfway through so it can’t of been uncomfortable.

We went for a walk round the block today and it was nice to see some of the area.  It’s nothing like i expected it to be and is a strange mix of arable land right nxt to a high rise office block, and a five star hotel with locals washing their veg in the river next to it.  I cannot compliment the Chinese enough though, everywhere is clean, they’re all polite and will do anything to please.  So far the trip has been amazing, from Manchester to Amsterdam, Hong Kong and then Hangzhou.  The language barrier has been overcome at every step and i have to admit not on my part, it was probably harder to be understood in Manchester than anywhere else on the trip!

Hi, we made it safe and sound just a little tired from a long but suprisingly good journey.  This is the first chance i’ve had to catch up with everyone so apologies if you’ve be waiting for updates.  We’ve been here just over 24hrs now and have been quite busy since we’ve been here.  Mum is settled in her hotel which i can see on the skyline from our bedroom window, myself and Grace have already made ourselves at home in our room which is more like a hotel than a hospital with everything we could need.  We met all the doctors and therapists today and Grace wil be having 4 injections in the spine and 2 through IV, i’d like to tell you why but the head man doesn’t speak english! and we get her weekly therapy lists tommorow after her CT scan.

The three of us went for a walk today and managed to find the supermarket, bank etc without much bother, you just have to get used to people staring at you.  As lovely and polite the Chinese are it can be a bit unnerving when they blatently stare and point at you.  The supermarket was great with everything you could want including live fish to take home for your tea.

There’s so many things to say but i’ll save them for later, you’ve all got a month of me to put up with yet.  I’ve tried putting photo’s on this but it doesn’t seem to want to play, if i continue to struggle i’ll have to send out e-mails with them on or post them on face book.

Sleep now.

A huge thankyou to everybody who came and gave us a great sendoff.  It means alot to know you’re all thinking of us.