Archive for June, 2009
Just about managed to get up at 5:45am this morning, and went down to catch the Aiport Shuttle Bus to the Terminal. Josh was a bit cranky, but not surprising really as he’d only had about 4 hours sleep!
We checked in really quickly, they’re certainly not as thorough as London Heathrow!! We had some breakfast, and then had a quick look around the shops. We boarded on time, got ourselves seated, Josh and I had a row of 4 seats to ourselves in the front with extra leg room, whilst Ant and Mum had the row behind to themselves. The plane was only about 40% full from what the cabin crew said, and so we all got to stretch out. Just as we were about to taxi, the pilot announced that there would be a 20 minute delay, which later tunred into a 50 minutes delay, and we finally left Shanghai an hour late.
The flight was really good, had a bit of turbulence throughout, but Josh didn’t seem to mind, and managed to sleep for about 4 hours. Food was good, but small portions!! I watched 6 really new films so I was really chuffed, and managed to have a doze for about 20 mins!
When we landed in Heathrow, we had to rush through to Terminal 1 to catch our connecting flight to Manchester. We managed to buy some magazines to catch up with whats been going on, and then went straight to the gate. This flight was so short, only about 40 minutes in the air, but Josh managed to fall asleep in my arms. Got our bags straight away, and then met up with Andrew from Tryfan Cabs, who picked us up in his minibus. Ant and him chatted all the way back about what’s happened in the world of sport since we’ve been away, and Josh slept again!
We got a lovely welcome home from Nannie, Dad, Chris and Ben, so nice to see them all again, and to be home. We all had a panad, and a bacon, sausage and egg buttie – yummy!! We then all got bathed (at last) and showered. Ant was the first to nod off, and went up to bed at 11pm, followed by mum. By 11pm though, we’d all been up for 24 hours!!! Josh and I stayed up until 12:20am, and when he yawned I took the opportunity and took him up to bed. Hopefully after all of the sleeping he’s done, he will still sleep tonight.
June 10th, 2009
We all woke up feeling quite strange this morning. It was a happy and yet sorry to leave kind of feeling. In a strange sort of way, we’ve all got used to life in China, and into our own routine. We had the Patient Co-Ordinators make us a banner, which was approx 1 metre tall by 80cm, with a gold scroll at the top. Ant wrote a nice message on it thanking everyone at the hospital for all of their care during our stay.
Josh had a lovely goodbye from the staff at the hospital, none of the nurses seemed to wanted to let him go!! We left for Shanghai Airport shortly after 1:30pm, with Jack our driver. We made good progress and got to the Airport at 4pm. The hotel was really nice, and it had a massive bed, the biggest I’ve ever seen!
We tried to have an early night, but that didn’t quite work out as we had HBO TV channel, and Josh was wide awake. I finally dropped off at about midnight, but Ant and Josh stayed up til about 1:30am, but Ant didn’t seem to mind because Australia were playing cricket live on the TV!!
June 10th, 2009
We all had a good nights sleep and mini lie-in this morning, although we were woken up by a phone call from an unknown person at 6:05am!!
The weather was good, and so we decided to go to Hangzhou Safari. We all got changed and packed everything ready for the day, Ant went to sign Josh out for the day, and was told that they needed to take blood from him before we leave. We had tears and screaming for a good 10 minutes as they dug around for his vein, and thankfully they got all the blood they needed for the different tests in one go, not like our first day here.
The safari was brilliant, Ant threw live chickens to tigers and lions, and mum threw meat to them. It was sad for the poor chickens though!! We saw giraffes, zebras, kangaroos, monkeys, aligators, emus, bears and loads more… We were driven and taken around the safari area by Tom, the hospital driver, and then we walked around another section of the park. We all had a really good day, well worth a visit.
We’ve spent the rest of the evening, sorting through everything, making sure that we’ve not left anything in drawer, cupboards, and getting everything ready for tomorrow and Tuesday. We are aiming to leave the hospital tomorrow at 1:30pm, which should get us into Shanghai Pu Dong Airport by 4pm. We will then check into the Ramada Airport Hotel, and stay there overnight. We then leave the hotel at 6am the following morning, and then a long day of flying and then HOME!!
June 7th, 2009
As predicted, Josh did not want to go to sleep last night. He was very happy and playing. We eventually put him in his cot at 12:30am, but Josh was not ready to sleep. He sat up immediately and started shaking the cot bars. The nurses came in at 3:00am, as they advise us to keep our bedroom door unlocked after stem cell procedure that day, so that they can check up on the patients. They watched over Josh in his cot, happily singing, and noticed that he was playing with the bandage over his IV line. To make sure that the he didn’t pull the line out overnight, we had to go to the nurses station to have his hand bandaged further. Josh was quite happy as nurse Helen played music to him from her mobile, and he performed by singing and dancing. It was 5am, when Josh eventually got tired and fell asleep, Ant and I had had to take it in turns staying up, and we were both drained.
Because of the late night, we decided to put the Do Not Disturb sign on the door, and we had a lie in until 10am. We were all still shattered, but we didn’t want to disturb Josh’s routine any more. We spent the morning and early afternoon in the room, sorting our clothes out and starting to pack. It’s amazing the amount to things we’ve accumulated over the last 6 weeks, hopefully we’ll be able to squash everything into our cases.
This afternoon we walked to the RT Mart, and then to my mum’s hotel. We watched a few episodes of Everybody Loves Raymond whislt Josh had a nap, and then went down to the restaurant for food.
As it’s our last full day tomorrow, we’re planning to go to Hangzhou Safari. Hopefully the weather will be like today has been, really warm and sunny.
June 6th, 2009
Despite Josh having a very good night’s sleep, he’s been very sleepy all morning and afternoon. He was woken up earlier, and was given his milk and breakfast before his food and drink cut off time. He was very good again for his last electrical wave therapy and standing sessions – so so much better than the beginning!!
We didn’t seem to be able to amuse Josh for very long this morning, he was tired, but wouldn’t go to sleep and wouldn’t play with his toys for very long either – it was a long wait for his treatment!
Nurses Amy, Kitty and Joan came in at 2:45pm to place the IV line in Josh’s hand, which was done really easily and quickly by Joan. Josh cried for a while, but soon stopped when Nurse Casey came in and played him his favourite Chinese song, which he sobbed to.
Josh was taken down to theatre and was put to sleep before the spinal treatment. We returned to the room, and waited for Josh to come back from theatre. After about 20 minutes, Lucy the patient co-ordinator came into our room without Josh. We obviously jumped to our feet, concerned that something had happend. Lucy explained that Josh was fine and that the procedure had gone well, but that when he had been woken up, and was screaming the place down!! She asked if we had a dummy or something to soothe him, but unfortunately for us, Josh stopped taking his dummy months ago. Lucy was given some toys for him, and she returned down to theatre. Within around 5 minutes, Josh returned, still crying… His voice was now croaky and mouth dry from all of the crying. He was given valium, was comforted us, and finally went back to sleep. He slept for a good 2 hours, which is what he really needed. He woke up in a much better mood, and was soon back to playing and singing. He was then allowed some food aswell, and because he was on back, we were only able to give him Quavers and Chocolate as they both melted in his mouth. The next 4 hours passed very quickly, and Josh was as good as gold.
At 10:15pm, his 6 hours was over and he sat up and was finally given his milk and some food. He has since been playing with his toys happily. We’ve got a day off tomorrow, but won’t be able to leave the hospital until his IV line is removed.
June 5th, 2009
Josh had a good nights sleep again, and was in a good mood. Linda came to us at 8:30am for his electrical wave therapy, which Josh was not at all bothered about (so different to 6 weeks ago!).
Nurse Casey had a good sing-song with Josh this morning, which I actually managed to catch on the camcorder, makes a change! Casey has taught him a Chinese song from her mobile. It doesn’t have too many words, but Josh knows the tune off by heart.
Standing was great again today, Josh managed the whole hour in the stand, alternating from one leg being supported and the other bent.
His physio session was recorded by Beike staff today, as it was when we arrived, for the changes in Josh abilities to be recorded. He did well again, but no unaided steps today either. We had a little walk around the 20th floor in his new trainers today, must’ve felt strange for him. He also hates socks and shoes, prefers to feel things around him with his feet.
Mum, Ant and other patients and family members had a Chinese lesson from Johnny this afternoon. They all really enjoyed it, but said that its an incredibly hard language to learn, but they were tought a few words like nurse (ha shi), doctor (yi shang), hospital (yi yuan). Really good lesson, just a shame that they’ve only got 4 days left to use what has been learnt.
June 4th, 2009
Josh fell asleep at 9:40pm last night, almost as soon as his head hit the pillow. He had a slightly disturbed night, waking every couple of hours, giving a little cry and then settling himself down again. He was quite happy when he was woken up this morning, and stayed in a good mood throughout.
His electrical wave and standing were great, although I think it helped him to be fed Cheese Cheetos!! He really takes after me!
Weather was a lot better today, nice warm temperature of 25 deg cel, and thankfully dry. We went for a short walk to the RT Mart to stock up on our essentials, it was so nice to get out again. Must say we’ve all entertained ourselves throughout the days stuck in by watching DVDs (we brought about 80!), read books (I’m on my 7th, dad had to bring me out some more!), playing with Josh (although I think he’s sick and tired of the same toys now too!), and thankfully the internet!!!
Today’s physio was good again, Josh didn’t manage any more steps alone, but he did walk from one side of the room to the other, only holding one of my hands, so its good progress.
Our bathroom here is a sort of wet-room, designed for easy access for wheelchair patients, which means that Josh hasn’t been able to have a proper bath since we’ve been here. We’ve been using a plastic baby bath, which we’ve filled and then placed on the floor in the room most nights without any problems. Tonight, Josh managed to find the plastic plug, and then lifted it without me noticing! The first thing I noticed was the bottom of my trousers a bit wet, and thought that he must’ve been caused by all the splashing he does. I then realised then that there was a lot less water in the bath than before, and that the floor was covered with bubbly water. I got Josh out, and then spent the next three quarters of an hour mopping up the water with a towel! Floor is really clean now though!!
June 3rd, 2009
Josh didn’t go to sleep until 1:30am, must’ve been fed up of spending all that time lying on his back. He slept until 8:15am, when I had to wake him up – really nice change!!
He was really good during his electrical wave therapy, and the time flew. He had standing shortly after, which also went well, this was helped by Sid, the Lead Patient Co-Ordinator who played Josh some tunes from his i-phone.
We had hoped to venture out today, at least to the park or to RT Mart – I don’t think I’ve been there in over a week! But its been raining all day, until around 6pm.So jealous of the weather at home – hopefully it might last until we get home!!
Josh impressed everyone again during his physio sessions, he can be such a show off, and its so funny because he’s so unaware that everyone is watching him! He actually walked two steps unaided today, which is absolutely brilliant. His confidence has grown so much that if we’re holding him upright, he will push our hands away so that we’re not holding him, and that he’s standing alone!
Today we’ve also tried teaching him to say his name, but I don’t think he likes the name Josh/Joshua, so he likes to call himself “Todd”! Apart from his name though, his words have become a lot clearer and he’s copying us a lot more. He’s also trying to say phrases now, like “up in the sky”, and some others which we can’t quite make out yet, poor thing!
June 2nd, 2009
We all had a good nights sleep, but had to wake up early so that Josh could have his milk and breakfast before his cut-off point.
Today is Children’s Day in China, and all the staff brought a gift round to all of the children on the 20th floor. Also all the staff had their photo taken with Josh and the other children. Josh had a lovely teddy bear, its so sweet. He didn’t think too much of it at first, as it takes Josh a while to sus-out new toys etc.
He had his electrical wave therapy and standing sessions as normal this morning, and Linda said that she would try and re-arrange her appointments so that we could squeeze his physio in before he had his treatment, and she did, except it only lasted about 10 minutes. This was because Josh had a tantrum, which we think was because he was hungry, poor thing!
Nurses Kitty and Catherine then came round at 2pm to place the IV line in before going to theatre. They struggled to find a vein again, his poor feet are covered in bruises. Once they found a vein, it didn’t take them long at all to get the line in. At 2:25pm, they took him down to the theatre on the 3rd floor for his spinal. He looked so small sitting up on the big cot trolley. They then gave him the anaesthetic to make him sleep, and he actually fell asleep sat upright, and we had to lie him down, but he looked flat out.
After about a hours anxious wait, Josh was wheeled back into the room still fast asleep. He was awoken by the staff then who took his pulse and blood pressure. He stayed awake then, even though his eyes looked very tired. The nurse came in and said that she would give him valium as before. Within around 5 minutes, he was wide awake, just singing, kicking and playing. We now know that valium doesn’t calm him down!!
His 6 hours lying down have gone quite quickly, although the last hour and a half have been a bit of a struggle keeping him entertained. He is now sat upright on the bed playing with his toys, and thankfully not in any pain. Lets hope he sleeps all night.
June 1st, 2009
We’ve been told this morning that we’re not allowed to leave the hospital today at all!! This is because Josh has his 7th Stem Cell Treatment tomorrow, and that the Anaethetist needs to explain the procedure as its another spinal, listen to Josh’s chest and for us to sign a consent form. This should only take a maximum of 5 minutes, but we’ve got to wait in all day… To make matters worse its really warm and sunny outside, and we’d planned a trip to the park with a picnic. We have to settle for a picnic in the room watching a DVD again.
We’ve not got long to go now, so today we’ve been talking about what we’re missing the most, I am missing my bed, it’s so much comfier and bigger than this one! Ant is missing Matilda… his Playstation and Sport on the TV! Mum is missing her bathl, as her hotel room doesn’t have one. It does have a really nice walk in shower, but it’s just not the same as a long soak in the bath!!
We’ve also planned what we want to eat when we get home! I can’t wait for a Sunday Roast, with all the trimmings, yum yum! Ant wants minted lamb chops with potatoes, as we have hardly had any potatoes since we’ve been here. Mum says she would love a Gammon Joint, with potato croquettes and parsley sauce… Instead this evening we’ve had KFC for a change!! I so need to go to Weight Watchers when I get home, I feel like I’ve put loads of weight on, it doesn’t help that we’ve been eating a lot of take aways and not moving an awful lot.
This evening, we’ve also caught up with Dad, Nannie, Chris and Ben on Skype. It was nice to hear that their journey home was trouble-free, and that they’ve all recovered well from a whole days travelling.
Tomorrow is Josh’s 7th treatment, and so he’s starved from 9am, poor thing!!
June 1st, 2009
