Amy woke up this morning at 09.00 with a cold and cough which resulted in her having a fever and raised temperature of 39.8C which raised the question as to whether or not she could have the Stem Cells today and we were thinking this is just our luck. After speaking to Dr Lisa we told her we would give Amy some Childrens paracetamol suspension(which they had not heard of ?) and then take the temperature again after an hour. 1 hour later her temperature was down to 38.9C so they said if her temp continued to drop we could go ahead. At 14,00 today her temperature was down to 38C. At this point we had to put the numbing cream on her hands ready for the Canula at 14.30. To be honest with you both Michelle and I were a bag of nerves at this point wondering just how our little girl was going to cope with the IV without any sedation. At 15.00 it all started.
We all took our positions trying to hold Amy still whilst nurse Aimee tried to find a vein. Thankfully she got it 2nd attempt. Now we at this point were expecting Amy to absolutley freak, but with Mum singing to her and Peppa on in the background we managed to get the Canula bandaged and the IV running without to much screaming. I hope you are all sitting comfortably. We actually got Amy to laugh during the 30 minutes that we had to hold her whilst the liquid gold went in, OK i’m not saying she was in hysterics but I tell you folks this was by far the easiest experience we have had so far. All of us who were in the room were smiling and laughing at how much better she coped with it without that flipping (wanted to use a different word) sedation. She was still upset and needed her Mum to cuddle and re-assure her all the time, but it was nothing like as stressful for her or us this time round. Once the flush had gone through we took the Canula out, she hit her hand a few times, told us off a bit, but then she had some banana milk and a few fruit pastils and was back to herself asking for more Peppa. My daughter is one amazing little girl who I am so proud of. Now if the next treatment on Monday goes as well as today, we are thinking about paying for the 8th treatment of Stem cells to be done within the 35 days so we would get one more in and still get home on schedule.
Thanks for all the crossed fingers. They seem to have worked.
Anyway guys and dolls, thats the good news for today. We are all a bit emotionally drained, so its off to bed for us all.
Goodnight…….XXXXXXX
November 25th, 2009
Wow, I can’t believe we are almost half way through our journey. Tomorrow feels like a big milestone in that it is the 4th set of Stem Cells. Only 3 to go. Amy had another set of bloods taken this morning, and it was all over in 10 minutes and she was superb through it. She let us know she was not happy, but nothing like the last episode. Canula in, blood out, Canula out, all done. Then 8 hours later results back all clear. VOILA.
We only hope that tomorrow will be a bit easier as we will not be putting her thru the sedation. Fingers crossed for us folks. We are going to have to try and cope without our Chinese interpruter Michael as he has been transfered to another hospital. I only hope I can hold her down as well as he did.
On a sader note for us, Pam, David and little Sam went back home to Ireland today. We are really going to miss them both as they had become our small islands of sanity in this crazy world, but we wish them all the best for the journey and we promise we will be over to see you both soon. Have a Guiness for me Dave.
We have just got back from the Holiday Inn where we were celebrating for another couple of families who are leaving tomorrow. Chris, Wendy and Mikala from Australia and Eric, Boudel and Victoria from Norway. Good luck guys.
On the ward now we are one of the families who have been here the longest and other families are asking us where things are and the best places to get decent food that does not cost the earth. Funny how it turns around so quickly. Anyway peeps Michelle and I are going to put one of our new DVDs with a cup of coffee, so good night and you’ll be hearing from Chel tomorrow. XXXXX
November 24th, 2009
Just a quick note to let you all know that your messages of support have brought tears to our eyes and renewed our strength knowing that you are all behind us even though you are all 7,000 miles away. Amy has woken up this morning her normal self asking for food and Peppa in that order. We know she is resilliant, but she still amazes us with just how strong she is. We will definatley be seeing this through, if she can bounce back that quickly.
We will be taking her out to Century Park today to try and cheer ourselves up. Speak to you all after the weekend. We miss you all.
November 21st, 2009
Once again today was just awful. Our lil pickle just doesn’t want to be knocked out. For the best or not. After an injection in her bum (again), medicine up her bum (taking her dignity aswell) and another traumatising stemcell treatment i just don’t know how she or we’re going to manage 4 more. 5 hours after all the sedatives (which is no use now) she looks so drugged up and is still so distraught, and then to add to that it has caused her to have diarrhea and sickness tonight. She has only just fallen asleep and all this began at 2pm…its now 9.30pm. (oops, maybe not. Another vomit at 9.45pm and she’s stirring)
Its so heartbreaking to watch her go through all this. I just want to stop and bring her home NOW. Do we? What would you do? I just don’t know anymore. Hanging on to hope is bloody hard when you feel like what your doing is more like child cruelty.
We have told the doctors we don’t want anymore sedation. Whats the point when its not working? Why stress her out on so many occassions when it leads to the same thing? Us and 4/5 others holding her down anyway. First its the injection in the bum then half hour later up her bum then half hour later IV in (which had to be done twice cos they couldn’t find a vein) then half hour of getting stemcells in to her. Next time it will be straight in with the stemcells and none of this faffing about. NO MORE!
God i wish it was as easy for Amy as it is the others. I’m not saying its not hard for them too but they’re no way having it as tough as our baby. And thats what it feels like tonight…like shes a baby again. Do you have to go backwards to go forwards?
I can honestly say that this is much harder than i thought it would be. And i’m questioning myself every second as to who is this for? Is it selfish to want a better life for your child? Why are we doing this? It felt like a miracle when we heard the news that there was a chance to help Amy Hana, and for 8 months thats all we strived for. To raise the funds it would take to give her the chance too…now we’re here…oh i’m babbling now. I’m sorry.
At least today two people from Beike witnessed all this. I think i saw his eyes fill up too. You can tell someone til your blue in the face what its like and how awful it is, but there’s nothing like seeing it for yourself. Now i think they know.
Well, time to go…we’re all totally drained now and i can’t think anymore. Plus, pickle needs a big hug from her mumma cos, yep, she’s being sick again.
This is gonna be a long night.
Bye x
November 20th, 2009
Hi there all. Hmmm, bit of a mixed few days!
Yesterday i went to the Jimo Market with the girls plus Peter:) which was a bit crazy! Its like a huge maze of shops/stalls that has everything packed into it on 3 floors. I’ve never seen so many shoes, bags, clothes..you name it, all in one place. You couldn’t swing a cat in there! It’s a pure Chinese living experience thats for sure. You have to be prepared to haggle! They put a price on a calculator and you half it! Then the bidding begins! Its was quite daunting at first but once you get the hang of it its quite fun!
Amy has been having the usual accupressure and physio with Jasmine (‘who am i’, lol) which she is getting used to, but you know Amy…when she’s had enough its over!
Members of the Beike company come and visited the hospital also. It gave us families the chance to offload our concerns with this hospital and more personal things…
Then, unfortunately last night Amy started scratching her head like mad. Yep you guessed it, nits! This has been a nightmare as the staff here weren’t really sure what they were. They had to call down a ‘specialist’ to look in Amys hair and guess what?…they wanted us to SHAVE AMYS HAIR OFF! Erm, don’t think so! At home this is water of a ducks back. It happens all the time to kids so this to us was just a bit extreme. Anyway, they gave us some moose like stuff which is a herbal treatment and has made her hair like concrete! Also we were asked to stay in our room and not tell anyone (like she’s got some disease or something). This meant Amy didn’t receive her usual therapies today and to be honest i am a bit pee’d off about how the matter was dealt with. It caused us embarressment bigtime and i was pretty upset, well VERY upset actually. Thing is we’re 10 days in so she could only of caught it here?!?! So, i’ threw myself into cleaning top to bottom as hygeine here is poor. Dettol all round, scrubbed the beds, surfaces, floors and walls…and i still have the bathroom to do!
On top of that its stemcell treatment no. 3 day tomorrow so nerves are kicking in. This time its a needle in the bum again and then a suppositery (excuse spelling!) up the bum. Poor Amy Hana 
We have to keep reminding ourselves that this is in the cause of good (we hope n pray every second of the day). I really really hope this time it knocks her out as it can’t help if Amys stress levels are sky high and its just not fair. But hey, life isn’t. If it was all of us families wouldn’t be here and there would only be good in this world of ours. If only we could fix them, or take their problems and let it be us. I’m so anxious waiting from one day to the next for Amys stemcells, and to see results in one way or the other. It feels like forever. If she could just see night from day, or the outline of our faces and bodies…or just be more willing to be part of our world…all the wishing in the world is being done for every person here. The families here really are ALL amazing <3 <3 <3
And man, we miss you guys and home soooooooooooooooooooooooooooooo much :S
Well, thats it for now. I’m in on my own with Amy tonight as too afraid to go out in case more problems arise with the nits situation and she has the moose on her hair so its a bit obvious. Chris is over at the Holiday Inn with all the others as its Kevin, Peters, Odette n Lorrindas last night here. I hope they’re having a good time and it has been lovely to meet them all. They have been a wonderful help and we wish them all the very best of happiness and luck for the future. Hopefully we’ll stay in touch.
Til the next time peeps… xXx
November 19th, 2009
Today Amy had to have bloods taken at 08.30am this morning to test her hormone levels again. She had to be nil by mouth from midnight last night. Once again Daddy and Mummy along with 3 nurses had to hold her down whilst 3 vials of blood were taken. This has pretty much set the tone for the day. Amy has been very miserable today moaning at us no matter what we have tried to do, even a short trip to the Lotto Mart consisted of her moaning unless we constantly fed sweets to her. We know it is not her fault but it is so draining. Mum has now gone to the kitchen to try and elbow her way past this Brazilian and Singaporean families who seem to need every work surface just to boil milk. Chel has her dont mess with me face on, God help them. LOL.
November 17th, 2009
Well the 2nd lot of liquid gold has been intravenously injected into Amy. First a 4 inch needle was stuck in her bum with 5mg of Diazepam. Needless to say this had about as much affect on Amy as an injection of water. Sometimes I think my little girl is made of granite! After about 15 mins we decided that we needed to proceed regardless of the effect of the sedation. Once again a 15 stone Chinese man named Michael had to restrain Amy’s lower half and a Daddy had to try and hold down the top half, whilst 2 nurses and a Mummy held her arms as the IV Canula was inserted in her hand. We then had to stay in place holding a screaming little girl down for about 30 mins while the liquid gold (Stemcells) slowly made its way into her system. I defy any man not to be touched by their little girl saying “Daddy Stop”. Mummy and me ran out of nursery rhymes to sing to her, so I now think the nurses know 1,2,3,4,5 once I caught a fish alive, off by heart. lol. The only difference this time round was that as soon as we finished, the canula was allowed to come out. 1 minute later Amy was asking for milk and sweets. She is one tough cookie ;-S
After this set of stem cells we have agreed that the next time we will try a rectal sedation rather than an intra muscular injection as to be honest with you I think the injection in her bum hurt her more than anything else. We have just been told that Amy has to have bloods taken at 08.30 tomorrow morning (17/11/09). She will not be happy about that, but at least she can hopefully get a good nights sleep tonight.
We have just ordered a pizza for dinner tonight (again!) as we are too emotionally drained to cook. I think we may be putting some weight on over here as the kitchen facilities are somewhat basic and being shared by 15 to 20 other families which makes finding a slot to do any cooking very difficult, but we are going for Spag Bog tomorrow regardless, and as every body who knows me knows I LOVE PASTA (NOT)
Night all xXx
November 16th, 2009
When as a Dad you hear your daughter scream, you close your eyes and you hope its a dream.
You hold her tight and try to assure, that this fear and pain will not endure.
The great big needles that pierce her skin to achieve our own hopes feel like a sin.
If my darling Amy had been given the choice, would she have said in her own sweet voice.
Yes please Mum and Dad take me to China, and have people I don’t know try to make my life finer.
As we sit and hear you scream, I hope this is also your unspoken dream.
As we sit here and the sobs leave your chest, I hope you know baby we just tried our best.
To bring you into our world of light, and give you the wonderful gift of sight.
We love you Amy…….
November 16th, 2009
This morning we were a little overwhelmed when we were visited by 8 doctors. They have decided not to go ahead with spinal lumbars for Amy as her thyroid levels are higher than they should be and full sedation could be dangerous and cause her airways to close up and also because she is not very co-operative they don’t want to take any chances, therefore it will be IV’s all the way. We just hope this won’t effect the results. So there we go, she really IS a pickle!
Apart from that, we have a free day today and so Daddy and Amy went for a walk to book us into the Holiday Inn so we can have a hot shower and a comfortable bed for one night. They managed to cause a crash! A man on a moped was staring at Amy so much he went into the back of a car and went over the handlebars and onto the boot of the car! Oopsie! xXx
November 13th, 2009
Today has been so different to yesterday even though it has been raining all day heavily:) Amy had massage with Dr Jasmine and was very co-operative followed by physio. Dr Jasmine keeps saying to Amy ‘who am i’ so Amy now calls her ‘who am i’ lol! It was also a better day because our pickle was herself and happier. . well until someone knocks at the door that is!!! She knows!
We took a trip to the lottemart on our own this arvo which was fun…you should of seen me trying to ask where the toilet was! Then trying to find a smelly candle for our smelly bathroom! lol…chris run a mile as i looked like a mad woman using my hands and body language to get myself across!
This evening we all went out as a group and there must of been atleast 25 of us! We went for a meal in the Holiday Inn which was luxury and the best meal we’ve had! It was great to get out and enjoy each others company, experiences, worries etc and to get to know each other. And we shared the wonderful news of a little boy called Sam getting light perception…it gave as all shivers of happiness and even more hope for our own children.
Though we’re not looking forward to Amys lumbar treatment on Monday, staying focused is the key and on the other hand we can’t wait to get more treatments out the way to get closer to amazing results xxxxxxxxxx thats everything crossed!
I am putting photos on Amys website at www.giveamysight.org.uk as i’m having trouble putting them on here so please take a look.
Bedtime now…i’m the last one in the sack again! I’ll write again following Amys treatment on Monday.
Take care all xXx
November 12th, 2009
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