Josh slept well again last night, and had to be woken up at 9am. He wasn’t too pleased about this, and was quite sleepy all morning.
It is a glorious day here again today, temperature believed to be 35 deg celcius. However, the worst bit is that despite Hangzhou being on the coast, we are at least 30 minutes away from it and get no breeze. Thankfully, Josh has a big bird fan attached to his buggy, which keeps him cool.
We had a walk to the park this afternoon, and had a picnic on the benches. We prepared our lunch ourselves, which was ham, cheese, and tomato rolls. These were quite tasty, and similar to home. It really is a very pretty park, and even though its only a few yards from the road, it is suprisingly quiet.
One thing I’ve noticed about the road users here, is that they don’t seem to suffer from road rage! They sound their horn all of the time, but its never followed by swearing, or hand gestures, unlike home. We saw a near miss between a car and a bicycle the other day, and the car drove in front of the bicycle, and the rider was a few centimeters away from the car, and had to jump off the bicycle to stop herself. She just jumped back on her bicycle and rode away, and the driver of the car just continued on his journey. We were stood on the pavement, screeching in anticipation!
Back to our routine tomorrow, with electrical wave therapy, physiotherapy and standing sessions. Mum and I have noticed some small changes in Josh’s eyes. His pupils have got smaller than before, and now seem to be dilating. We dont think that he can see anything yet, as we’ve tried to use the pen light, and he isn’t responding. I’ve also noticed that his eyes seem to be working together a lot more than before, as he right eye would often turn inwards, similar to a crossed eye. My mum used to work in an Eye Hospital in Caernarfon a few years ago, and so I’m pleased that she’s also noticed the improvements, and so I know its not just me imagining them. Dr Hong will visit Josh tomorrow morning, and so I will mention these changes to her, to see if she agrees.
May 10th, 2009
Today has been one of the longest days for us so far. As its the weekend, Josh hasn’t had any sessions or treatments, but he still had the line in from yesterdays stem cell treatment. Josh had to be woken up by us at 9am this morning, and was in a really good mood. He really did not want to go to bed last night, it was after 1am on him actually going to sleep, which was lucky that we didn’t have anything planned.
Mum and Anthony went to the supermarket this morning to get a few supplies, and came back really hot and sweaty. They told me that it was a lot hotter than yesterday, and had been told by the hospital staff that it was 40 degrees celcius. It isnt as stuffy with polution as we had thought it might be. Even on a gorgeous day like today, the sky is never as blue as home, and visibilty is not always as clear due to the mist.
Josh had his temperature taken this morning and early afternoon, to ensure that he wasn’t suffering from any of the side effects of the stem cell treatments, which thankfully he isnt. At around 1445hrs, nurses Amy and Catherine came to remove the line from his forehead. Josh hasn’t been too fussed about the line being in his forehead, and it didnt seem to hurt him too much taking it out. Removing the tape from his line and around his head was a different matter!! Poor Josh screamed as we gently pulled the tape off from his hair.
We’ve spent the rest of the afternoon relaxing in the room. We have had another Skype conversation with Dad, Nannie, Chris and Ben at home, which was really nice. Seeing Josh getting all excited when he heard their voices was lovely, I’m sure he cant wait til they come over either. He kept on showing them his “up” and “down” movements he’s learnt here.
We’ve had a Papa John pizza delivery for tea tonight, which was very tasty. We hope to go out tomorrow, hopefully it wont be as hot as today, and a bit more bareable for Josh than today.
May 9th, 2009
Josh slept well again last night, and woke us up at 0640hrs this morning, very bubbly. This mood soon disappeared when Linda tried to put on the electrical wave pads. After a burst of screaming and tears, she decided that as he had a big day in front of him with his second stem cell treatment, that she would give the electrical wave therapy and standing session a miss. Josh was pleased with this and soon perked up. I’m sure he understands far more than we think he does!!
Due to the cancellation of his morning sessions, it meant that time dragged, especially as we’d been up so early. We went for a walk to the park and RT Mart again before lunch. The weather was gorgeous again today, believed to be about 32c. We bought a french baguette which was really nice for lunch, as the bread we’d bought previously was really sweet, and quite sickly.
Josh was taken into the Treatment Room at 1345hrs. The nurses started looking for a vein in his hand, despite what the doctor and I had discussed, and after a failed attempt to get the line in, they opted for his forehead. This involved 6 of us holding Josh, keeping him still and calming him down. He screamed throughout, which was really tough on us all. Once the IV was in, he soon calmed down, especially as the nurses plugged in the stereo, and had “Postman Pat” playing in the background! Thankfully Josh fell asleep during this, and slept for approximately an hour and a half. He woke up happy and cheerful despite his trauma before. He has felt the line, which is taped to his forehead, but thankfully has not tried to pull at it (yet). This will be removed tomorrow morning, once they’ve taken his temperature to make sure that he’s not had any side effects or picked up an infection. To be fair, all the staff at the hospital are extra careful when it comes to cleanliness and hygiene, which is a relief.
We’ve now got the weekend free from any sessions or treatments, and so are planning to visit a couple of nearby areas. We are actually based approximately 30 minutes from the centre of Hangzhou, which puts the size of this area into perspective.
May 8th, 2009
Josh woke us up at 7am this morning. Unfortunately he wasnt as happy as normal, and was quite teary. He had his daily dose of electrical wave therapy, which he seems to accept a little better now, even though Linda is increasing the strength every day.
He was really lazy with his standing therapy, and managed to find a way to wedge his little bottom into a gap on the stand, and seemed to sit down taking the weight off his feet. Linda said that she could tell that he wasnt in the mood, and that she would cut the session short, and extend the afternoon physio session instead.
In our break we had a lovely walk to a new park further along from the RT Mart, which was very beautiful and peaceful. The weather was absolutely glorious, and we’ve all had a little colour on our shoulders today during the walk. The Chinese people are still staring at us, and mum thought today that they might think we’re strange exposing our skins during the heat, as most of them seem to be in layers.
Josh had a good physio session, and mastered the sitting to standing position, or “Up” and “Down” as he calls it. He’s still not too keen on being on all fours and rolling on his side. We’re not sure if this is due to his blindness, or whether he isnt strong enough to support himself and that he doesn’t feel strong enough.
This evening we have been to my mum’s hotel, and had a swim in the pool. Josh wasn’t too sure of the water at the beginning, but had so much fun that he didn’t want to come out.
We’ve just had Josh’s schedule for tomorrow, which shows him booked for his second stem cell treatment at 1415hrs. This procedure is going to be through an IV as before, but they are going to try the hairline for veins, as Josh’s veins are difficult to find. The hairline seems to be a very standard location for IV’s in China, not sure about the rest of the world. The doctors say its easier for them, and in Josh’s situation, we want the stem cells to work on the optic nerve, which is very close to the hairline, not sure if this makes a difference, but it kind of makes sense.
May 7th, 2009
Josh slept until 7am this morning, and woke up singing the music to Kid Cudi Day n Night!! He’s not slept through like that in ages…
Today was hotter than yesterday, and a lovely clear blue sky. Ant and mum tried a different supermarket this morning, Times Extra. This is a large building, set of four floors. They sell absoutely everything from jewellery to tools. They bought some items for us to make lunch, must admit the ham looked a bit strange, but it was tasty. I am so fusy with food, however I don’t think I’ll starve here as they found me a bar of Toblerone today, yum yum.
Josh had his electrical wave therapy this morning, and absolutely screamed throughout. It was so embarrasing, all the nurses and staff came to see if he was okay. He’s certainly got a temper, and we are approaching the dreaded terrible twos!! It turns out that the batteries in his CD player were dying, and the songs were jumping, and so this was the cause of the outrage. Thankfully Linda his therapist found their staff portable plug-in CD player, and has given us this to us for our stay.
Josh had his first standing session in the frame today. This was a giant bed, which Josh was strapped to, and then the bed was tilted so that he was putting weight on his feet, making his legs stronger. We played his nursey rhymes whilst he was in it which helped, but he did start shouting “london bridge is falling down” which was quite funny.
We went for a walk around the block again this afternoon during our break. Mum has pulled a muscle in her knee last night, walking to the hotel. She’s not in too much pain, but felt that the exercise did it good.
After lunch, Josh had another physio session this afternoon, with his nursery rhymes playing in the background (of course!). I didn’t think he was as teary today, but mum and Ant disagreed. I think he’s slowly getting used to it, and I certainly think that its having a good effect on him, because he was sat on the bed afterwards, and managed to move himself to the end of the bed and turn around without any help. We’ve not been used to this, Josh has always been quite happy playing in one spot, and wouldn’t move around.
This evening, Josh has met the new nurse Casey on nights, who he bonded with immediately. He put his arms out to her straight away and started singing to her. She then brought out her mobile phone and started playing him a Chinese song, which we hadn’t heard before. Josh instantly started huming along to the music, Casey was very impressed. Josh has an impressive ear for music, and picks up and remembers tunes very easily. While we’ve been here he’s been singing the music to Eastenders, Homes Under the Hammer and the advert “moonpig.com”, even though he’s not heard them in over a week! Maybe we watch too much TV in our house!! Surprisingly I’m not missing my TV that much, obviously I’ve sky plussed, and series linked all of the Corrie episodes!!
May 6th, 2009
Today has been a beautiful day in Hangzhou, the weather has been lovely and warm, and we have been able to see a fair distance from the hospital window, which is on the top (20th) floor.
Had a bit of a problem with the taxi this morning. We thought that we’d arranged for Tom to pick my mum up from her hotel each weekday morning at 0830hrs, but no-one showed up. Mum was stood in the foyer of the hotel patiently waiting, whilst Ant kept on checking the hospital car park and reception for the hospital cars and drivers. We had tried phoning mum’s room, but as she was waiting in the foyer, she didn’t answer. Ant then decided after 45 minutes waiting, that he would walk over to my mums hotel and then catch a taxi back, as there are plenty of them in the area. Forgot to mention yesterday, that when the taxi was taking mum back to the hotel last night, they witnessed and were involved in surprisingly the first collision on the road! Tom their driver, was reversing out of a car park space in the hospital car park and collided with a vehicle behind him, thankfully they weren’t going very quickly, but Tom never got out to check for damage or anything!
Josh had his electrical wave therapy like yesterday, which Linda adjusted to be a little stronger. Josh didn’t approve of this when she started, but soon forgot about it, hopefully he’ll get used to it.
His physio was delayed until the afternoon as Josh still had his IV line in. This was removed at 1030hrs, and Josh being Josh, hated me putting pressure on the wound and kicked and wriggled free, causing it to bleed. There was blood all over my trousers and the bed sheets. I’d already had to turn the bedsheets over once to hide the vegemite marks he’d left on it the other day whilst eating his toast, now we had stains on both sides!!
As we had a long break from his electrical wave therapy and his standing therapy at 1500hrs, we decided to go for a walk, to try and burn some of the calories we’ve put on during the last week. We walked across the busy road, and up towards the New Century Hotel, which looks a bit like the Empire State Building, except smaller.
When we returned from our walk, Josh had his standing and physio sessions. He was a bit better than yesterday, thankfully not as many tears for poor Linda. The only way we managed to get Josh to stop crying, was to play him a ringtone song off Ant’s mobile phone. He was dancing and singing with Linda to Kid Cudi’s Day and Night. Everyone kept on coming into the physio room and watching in amazement! I must admit, as a parent to see your child being put through their paces, and him screaming and stretching out for you is very difficult. I know its got to be done, and that it’ll help him, but it doesn’t make you feel any better. Josh’s balance does seem to be improving, as he stood for approximately 20 seconds unaided today.
After his sessions, we had a visit from Li Fan and Damien, who are both friends of Simon, who had very kindly put us in contact before our trip. Both of them had helped us before we left for China, search the superamarkets for Heinz babyfood, as this is Josh’s favourite. We were worried that we would have to ship a box full out, but thankfully Li Fan’s wife found a supermarket which stocked them. They then accompanied Ant to a local mobile phone shop to purchase 2 pay as you talk sim cards, so that we could get in contact easier with mum, to prevent any of this mornings hassles! So a big thank you to Li Fan and Damien, as I know we wouldn’t have been able to sort it without their help.
Josh has been asleep this evening since around 1930hrs, which is a rare! Josh usually determines when Ant or I go to sleep which usually between 2230 and 2330, and normally only sleeps for a period of around 6-8 hours, which can at times be tough. I guess we’d better prepare ourselves for an early wake up call!!
May 5th, 2009
We woke up early this morning, to get ourselves ready for a busy day. Ant tried to get one of the hospital cars, but they hadn’t arrived, and so Ant caught a taxi from outside the hospital to pick up my mum from her hotel. He asked the driver who spoke no English to take him to the Holiday Inn, but he didn’t understand him, and so he showed him a note that a nurse had given him the night before. The taxi driver then drove him about 500 yards, down the road to Jingjing Inn. Ant tried to explain that this wasn’t the correct hotel, and that he wanted the Holiday Inn, but the driver did not understand him. Ant ended up paying him 10RMB, and then walking back to the hospital. Luckily when he got back to the hospital, Jack the hopital taxi driver had arrived, and took him to the Holiday Inn.
Josh had electrical wave therapy at 8:45hrs, where 4 small TENS pads were placed on both thighs, and calves, followed by his upper arms and forearms. They were switched on for 20 minutes each at the lowest setting. This will be increased during our stay, and the aim is to increase Josh’s muscle strength, to assist his walking and crawling.
At 10:00hrs, Linda came to get Josh for his physiotherapy session. Josh has only had about 4 physio sessions at home, and so was not used to it, and cried thorughout. We kept his earphones on throughout as this is usually a good distraction with him, but even that didn’t work. Linda was really sweet, and was not hurting him at all. I hope he wont be as upset again tomorrow, and that he starts to get used to it.
We went for a short walk after this, as Josh was tired, and was ready for a sleep. We went to a small park with pretty gardens alongside the river, which is opposite the hospital. There was a lady washing some clothes in the river, and another one had cleaned an enormous rug against the railings.
At 1430hrs, Josh had his first stem cell treatment, which was via an IV. We all felt quite apprehensive before we went through, as he was quite happy, and we knew what was ahead of him. It took the nurses 2 attempts to find a vein, as Josh’s veins are well hidden, and everyone so far has had difficulties in doing this. Josh was very upset, especially as they had to dig for a vein. We kept Josh’s headphones on throughout, which helped calm him down a lot. One they found a vein, they attached drip of 100mls of sodium to rinse the vein out. After about 50mls had gone into Josh’s little body, they attached a small clear bag with yellow fluid inside, which was the magic stem cells. The bag of stem cells contains between 10-15 million stem cells, and took around 30 minutes to travel down the drip into Josh. After this, Josh had the remainder of the sodium passed through the IV. The nurses have told us that the IV line will have to stay in overnight, and that they will check on him hourly following the treatment. They say that the main side affects after the treatment are headaches, temperature and vomitting, but not all patients experience these. As we’re not allowed to go out anywhere this evening, we’re having a take away delivered to our room.
Managed to speak with my dad, grandmother and brothers on the Skype last night, which was surprisingly clear. It was really nice to see everyone, even though we’ve only been away from home 5 days!!
May 4th, 2009
We’ve not done an awful lot today. We had a chinese take away to our room for lunch, which consisted of 3 chicken dishes and a bowl of noodles for Josh, this all came to 59RMB, which is approximately £5.90!! What a bargain, it was really tasty and very filling. After lunch we went for a walk to the RT Mart, trying to burn off a few calories. Josh gathered a crowd of around 10 people around his buggy in the store, everyone wanting to touch and talk to him.
About to have a chat with my dad, grandmother and brothers at home via Skype. Hope this works, which means that we can see them and they can see us too, which is really clever. Wouldn’t it fantastic if one day during this stay in China that Josh might get to see them on Skype aswell… wow, that would be fantastic.
We’re hoping to have an early night tonight, as Josh didn’t want to go to sleep until after midnight last night.
May 3rd, 2009
We’ve had a good time today. We thought Josh had a physio session this morning, but there was a bit of mis-understanding between us and the therapist, as she had forgotten it was a bank holiday. From the 1st to the 7th of this month is Labour Day, or rather week for the Chinese. This means that the popular tourist spots are jam packed with people everywhere!
We went to the famous West Lake this afternoon, which looks very pretty, and I can’t believe how big the lake is, its enormous. It then started to rain unfortunately and so we sheltered in a local shopping mall, where we found Toys R Us. We bought Josh a few toys for his stay here, as he’s got bored with the same ones we brought over from home. We’ll have to return to West Lake on a sunny day, as the views across the lake are said to be fantastic.
This evening, we had an evening meal at the Holiday Inn where my mum is staying. I had a sirloin steak, as this is my Saturday night treat. It was very tasty, but not as good as dad’s sizzle steak! We’ve not got anything planned for tomorrow yet, we’ll see what the weather is like, and decide what to do next.
We’ve had Josh’s schedule from Monday, and he’s going to be very busy. He’s got a visit from Dr Tony at 8:30, followed by electrical wave therapy at 8:45 until 9:25, then Physical therapy from 10:00 until 10:45, his first stem cell treatment at 2pm, and then standing treatment between 3:00 and 3:30… so might just have a rest tomorrow before his hectic week!!
May 2nd, 2009
Josh has had a good day today despite being woken up by nurses poking and prodding him at 8am this morning. 4 nurses came to our room at 8am to take blood for tests to be carried out on him, and unfortunately Josh’s veins were hiding away, and did not want to be seen. After about an hour the nurses had got enough blood for the tests to be carried out and so I spent the next half hour comforting him.
After the blood was taken, Josh was assessed by Dr Tony, who had read all of his notes, and examined him. He told us that all of Josh’s Stem Cell Treatments are to be carried out via IV as Josh is fortunate enough not to have any further problems relating to SOD.
We all then went for a walk to RT Mart, which is like Asda or Tesco, with a slight difference! They stock everything from electrical appliances, clothing, bikes, clothes… you name it they’ve got it. Including cooked chicken, but unfortunately not the sort which you buy from our stores, all sealed up, all yucky bits removed, and ready to eat, but an actual skinny cooked chicken hanging up with its legs hanging, head flopping and looking absolutely disguisting. I’ll have to take a picture on my next visit for you to see, pitty I can’t capture the smell! But on a good note, they stock Heinz baby food, not the same flavours at home, but close enough, even though we have to look at the picture to decide what it is!
For lunch we had good old KFC. Ant ordered by finger pointing a picture of a bargain bucket, but as they don’t come with chips here, Ant asked for 2 portions of fries, and we got some strange wrap containing brown meat and sauce, which was possibly beef, but we didn’t find out because we were too scared!
We’ve been stared at constantly today, we don’t mind the ones who point and coo at Josh, but some people just seem really rude and stare at us as if we’ve come from space! I mean I realise that a lot of them have never seen a white western person, but it feels so strange. Today we’ve realised that some babies in China, just don’t wear disposable nappies, or terry-towelling nappies, in fact they don’t wear anything! Their clothes are designed with an open crotch, so that the babies can pee and poo freely! We have seen two young boys today in the shopping centre, being held up by their mothers, and them peeing onto the floor! I couldn’t believe my eyes! So far everywhere we have been has been so clean, and yet these babies were just peeing, there’s no wonder they employ so many cleaners mopping the floor constantly.
We’ve had a lovely meal this evening at my mum’s posh 4* hotel restaurant. Ant was greedy as usual and ordered a starter and main meal of lamb chops, sauted potatoes with melted cheese and roasted vegetables (starter was only minestrone soup though), and mum and I both had mega beef burgers, with bacon, melted cheese and chips, and Josh helped himself to a few chips too! They were really nice, and was very reasonable 380RMB (which is approximately £38). We’ll definetely be visiting there again soon.
Josh has just had his bedtime shower and toast, and will soon be going to bed after some milk. He’s got one physio session tomorrow at 10am, and so we’ll hopefully do a bit of sightseeing.
May 1st, 2009
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