Q&A

August 14th, 2009 by Graced

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

Spoilt

August 12th, 2009 by Graced

Hi sorry for the delay in posting but it was hard to get Michael of Ebay and Autotrader as well as trying to stay awake as all i seem to do is doze on the sofa.

We’re all good here, Michael got the Train to Beijing early this morning and is due to fly home in about 30 mins.  So far this morning Grace has had her first iv of stemcells, or cold tea, i’m still not totally convinced, and we have the rest of the day off.  It’s mid 30’s today so don’t think we’ll venture out till later this evening, maybe for an icecream.

The last few days have made me realise how spoilt we were in Hangzhou.  Monday Grace went for an x-ray, ECG and ultrasound in the main hospital and it was just like the pictures you see on the news.  Crumbling walls, people everywhere, dripping pipes, poor lighting and SMELL.  In Hangzhou it was a fairly new hospital that was incredibly clean with top of the range equipment.  Michael went into the x-ray with Grace and while they jumped behind the lead screen he was left there with no protection and the ECG machine still had suck on cups to attach to the chest.  Another bonus with Hangzhou was that all therapy was done on your ward, here we have to travel to another building for physio and o.t.  Although i think the rehabilitation side here may be better, only been to on session so will have to see.

My last rant will be the supermarket, it is nowhere near as good as Hangzhou and not within walking distance so they only get 2stars there. 

Tomorrow is Physio in the morning and O.T in the afternoon and the same friday.  Grace’s first spinal is on Monday.

I won’t be able to put any pictures up until i get home as Facebook is blocked here and this website always tells me my files are too big to post.

Thanks for all the comments.

leanne & grace

Shijiazhuang

August 10th, 2009 by Graced

Hello all, we’ve arrived safe and are just spending our first night in th hospital. It’s 4.30 am here and i can’t sleep so thought i’d catch up with you all while Michael and Grace sleep.

The journey from Manchester to Beijing via Charles De Gaulle was fine with Air France being very good. Arrival at the hotel in Beijing was fantastic and we were glad we’d come the day earlier and chosen to rest in the hotel. We stayed in the Crowne Plaza just 10 minutes from the airport and everything about the hotel was excellent. We arrived very early and they let us check in at 8am at no extra cost so after a quick breakfast we slept the day away. Breakfast was fantastic with everything you could possibly want, from full cooked breakfast to chinese Congee. The whole stay cost less than £200 and that included 2 breakfasts and dinner for the 3 of us, pre dinner drinks (Michael managed to get Jameson) after dinner coffee and also the room rate.

We were picked up from the hotel on sunday morning by Sid, a translator, in a minibus for our journey to Shijiazhuang and the hospital. This took 5 hours and was awful. I try not to use western standards over here but this was tough, Grace however slept on Daddys lap for most of it so it can’t have been that bad. I might get the train back to Beijing on our return, it only takes 2.5hrs and i hope is less cramped and bumpy.

Arrival at the Hospital was a mixture of emotions with some big improvements compared to the previous hospital and some differences which i’m unsure wether they are improvements yet.

The ward here has much improved security with finger print access and your own key to your room. The security in Hangzhou was an issue for many westerners. Our room is huge! with a big living room/dining room, big bathroom with bath, shower, toilet and double sinks and finally th ebedroom with walk in robe. You’d be paying a fortune for similar size flats in Chester. We’ve got 2 tv’s, Dvd player, internet access in room a large fridge freezer in room and kitchen down the corridor. The down point- they’ve just had the carpets cleaned and it smells damp so i’ve got air fresheners everywhere that are doing little to mask it. Hopefully they will dry out soon.

On arrival Grace had her temp, pulse taken etc. We were given a tour of the ward and our dinner order taken and then we were left alone to rest, a big contrast from last time where blood tests and MRI’s were all crammed in the first day. The day starts tomorrow at 7.30am and i’ll try and update tomorrow evening.

Thankyou for all your comments it’s lovely to get them. Keep in touch.

Leanne, Grace, Michael.

We return

July 21st, 2009 by Graced

Hi, we will be returning to China for more treatment on the 9th August. This time in Shijiazhuang in Hebei province. Please keep track of us and all comments and updates keeping us in touch will be very welcome.

Strength

August 22nd, 2008 by Graced

Grace is fit and well and continues to love life, everyday sees her getting stronger and more the demanding toddler she should be.  Over the last month or so i’ve noticed quite alot of changes that are hard to be sceptical about, so here goes the list!

  • Her head control has improved, still not great but getting there.
  • She smiles when you smile.
  • She chews her food.  Still on puree but tolerates lumps.
  • She’s never still!
  • She’s found new movements so she can see what she wants.
  • When doing physio she keeps her toes up for a few seconds.
  • She’s put on weight.

These are all great steps and we’re all really proud of her.  There’s arguments that these Are developmental milestones she would have met anyway but i know my daughter and i think these improvements are coming quicker than they would of without stemcells.

When we were first deciding whether to go to China we always said 5% improvement would be worth it, i think we’ve achieved that and we will be going back as soon as schedules allow and i can bear to leave my youngest girl behind.

I’ll check in again soon.

Routines

July 9th, 2008 by Graced

We’ve been home a few months now and life revolves around Grace’s routines. She continues to attend school 3 times a week and Stick n Step 2 twice  week.  Progress is slow and requires alot of patience.  Friends and family believe there has been a huge difference in Grace i on the other hand find myself being very critical and negative.  Being so close to Grace means i’ve put a safeguard up so that i can’t be disappointed and so that i still have the  energy to push Grace to be everything she can be.

So what you really want to know is there any improvements.  The one definite feeling i have is that her eyesight has improved, whether this would have happened eventually i couldn’t say.  Physically her abilities are the same but her movements seem to have more purpose and the accuracy of her reach/grasp seems to have improved.

Grace continues to bring so much to our lives and this will continue whatever the future holds.  She has so much determination and strong will that i believe she will always get where she wants to.

More updates when i have them. 

Hiya

May 10th, 2008 by Graced

We’re settled back at home now and it’s like we’ve never been away. My experience in China was amazing and it will prove more so if we see results in the next few months. Grace settled right back into her routine but it took me a few weeks to get back into the swing of things. It was more of a culture shock coming home than going to China and i had to learn how to speak to people again. I can’t thank you all enough for your support it meant a lot.
Progress- we have another month or so before they say we should see results but there have been changes so far. Some changes are quite strange but i’ll list them all, at this point i can’t say wether it’s from stemcells or natural development. So her hair colour has turned a shade lighter and has changed texture slightly. I believe her torso is stronger and head control improved. Her Cranial Osteopath believes she feels ‘better’, i can’t explain this but i believe it is an improvement. And today she said a recognisable Hiya to her teachers at school.
Let’s hope i have more to tell you in a few weeks.

Home

April 21st, 2008 by Graced

We made it home safe and sound after a long but uneventful journey.  Grace was very good on the way home and even managed to sit in her own seat for about 4 hours which gave us a bit of a break.

It was great to see Rose and i think she just about recognised me.  Monday sees the start of the usual routine and back to being very busy for Grace.  I’ll update in a few weeks with any progress..

Home Time

April 16th, 2008 by Graced

Michael made it here safe and sound and we’ve been running him round trying to show him a months worth of experiences.  Today it was the lake, a temple i don’t remember the name of and Hefang Street (shopping).  We had a lovely meal out and it was great to have an adult to talk to and share the load with Grace.  We’ve taken lots of photo’s and will update them when we get back.

Grace had therapy as usuall today and was useless.  She really played on Daddy being here with tears and tantrums so it’s probably best we’re coming home.

Thankyou for all the anniversary greetings it’s nice to be together for it especially since we missed last year.

Got to finish packing now so i’ll cut it short.  When we get back i’ll probably update the blog every month or so for the next 6 months with details of any improvements.

Thankyou all for keeping in touch and for your support of the last month.

Love

Leanne & Grace. 

Thoughts

April 15th, 2008 by Graced

Just a quick message to two people(they know who they are) to wish them all the luck in the world.  I hope it’s not too hard on you both and that the nursing care in Davyhulme is up to scratch!  Our love and thoughts are with you.