Grace’s Blog

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.

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. 

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.

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..

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. 

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.

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.