Jay had his therapies as usual, not very co-operative at his PT but was very good at his OT (for a change). He was thrilled when Lily put his tongue to the top of his mouth and he was able to say J for the first time. He got so excited and managed to say the letter about 6 times. He also managed many other exercises and was so happy when he managed them. Jay & Granny went for 2 long walks down the street and Jay waved to all the cars as they peeped and there was lots of peeping (it’s like constant road rage here). Jay in a very good mood this afternoon and is still awake as I type this blog at 9.15pm. Granny was woken in the night by a bad nightmare about Jay, she dreamt he had wandered off as he is always trying to do she eventually found him in a small stream in a hypothermic condition. she awoke shaking with fear. Just a few minutes later she heard a door opening, thinking it was either me or Julia going to the toilet, she didn’t think much of it but lifted her head to look and to her surprise there was Jay with the front door open just ready to escape. Nobody had woken up to his getting out of bed, (Up to his usual tricks) we do have suitcases pushed against the door so he can’t open it but he had managed to pull them out of the way. Julia & I went shopping, we bought some thermals as it is getting really cold here. Everyone wears thick footless tights here, even the men to keep them warm as I discovered when Jay was trying to look at there socks.
November 18th, 2007
Jay had all his therapies as normal again, he was showing his stubborn side today as he would not do anything he was asked he would just lie back and shake his head to say no. I try to explain to him that it is all to help him but he really didn’t care, so not a very good day. I think he was tired as he was dragging his legs a bit. Jay has managed to say eee on a few occasions which is very good, he can’t say it consistently but it is good that he has said it, we will keep practicing. I found a lump on my shoulder which was getting quite swollen and sore so I showed it to Jays doctor, she brought another doctor from a different hospital to have a look at it. He said it was an infected cyst; he put me on antibiotics and said I would need a small operation to remove it, I’m not sure if to get it done here or wait until I go home, they said I could discuss it when the infection has gone. Grandma and Julia went to find a bank to cash some money, We called into a supermarket, and was passing this tea stall, and was invited in to try some different teas as it is there tradition to have tea parties, well we was having a lot of fun, they was offering lots of different biscuits and we must have had about ten cups of tea. June said we would have two packets of tea and a packet of biscuits. The tea lady asked for 880 RMB (£59.00), we were shocked by the price as we didn’t expect tea to be so expensive, we had an interpreter with us so we managed to change the tea for one that cost about £5, they was selling us only the leaves that was freshly picked for the rich ladies in China, so we had a very rich tea party it was fun, they thought we had plenty of money. June said it was because I had my rings on, and they thought I was rich. Well it goes to show all that glitters is not gold.
November 16th, 2007
Jay was woken by the nurse at 6.45am for his blood pressure taking. It was the first morning he had to be woken and we wished she had left him asleep as it is a very rare occasion for us to actually get a sleep in. Grandmas turn to get up with him so I dressed him and we went walkabout the hospital until 9.00am when he had to take his medication and get ready to go to go for his therapies. Julia’s day with Jay today. I took Jay to see Mandy for his physiotherapy with a lot of coaxing he did all the exercises that she wanted him to do, she really does stretch Jays legs he does not like it because it hurts him, but it is what he needs. We then went into the computer room, which he likes, he played with his DVD, including the television, and he was in and out of the room like he had never been in it. We then went to see Lilly for his occupational therapy he just laid down and put his hand behind his head and refused to do anything so I bribed him with some sweets he did some of his exercises not them all, he was so tired with the medication. I then took him for his massage. He fell asleep. I later took him back to our room he then he had to lay still for the rest of the night with his IV. Long day for Jay. He went to sleep about ten.
November 16th, 2007
Jay slept until 7am which is really good for him, it must be the medication that he is on. I went for a leg wax today which was quite hard to get as they don’t appear to do much waxing here as they are not as hairy, so I was told. It cost 238 RMB (nearly £16.00) which is quite expensive for here. We went to two shopping malls today, SOGO which was where I got my legs waxed, this was an expensive shopping centre, it was all designer goods. The other one was the New World Shopping Centre, it was similar to a shopping centre at home but a bit bigger. There are shopping malls everywhere, it is overwhelming as I am not really a shopping person. Grandma took Jay to his therapies today. He was not very co-operative, just wanted to lie down and rest. At OT in the afternoon he put the pegs in his mouth so we had to finish early and he was taken back to his room as a punishment as he hates being in his room. After that he was very very good and fell asleep through his massage. He went to sleep about 10pm.
November 16th, 2007
Monday morning again. It’s now start of week 4, only 5 weeks to go. Eight days until Jay gets his first stem cell treatment. Therapy as normal, physio at 9.30, Jay had a slow start but eventually got going. We changed O/T to 2.00pm to see if Jay would try harder, he did a bit better but still not great. Jay was good for TCM he fell asleep for about half an hour while getting his massage.
November 13th, 2007
No therapies today, Jay slept until 7am this morning, so there is an improvement there. We set off to the Beijing Aquarium and zoo at about 12.30pm it took about half an hour in the taxi and cost about 50 RMB each way (about £3.40). The price for getting into the aquarium and zoo was 100 RMB (£6.70) for an adult and 50 RMB (£3.40) for a child. Jay wasn’t too impressed with the aquarium, he liked the show with the seals and the dolphins but that was about all that he liked, we thought it was good. The zoo was really good, Jay liked the monkeys but not too impressed with the other animals. We thought it was really good apart from some of the animals were in really small cages, we didn’t manage to see all the animals as it closed at 5pm. We got out at about 5.30pm (rush hour) it was a bit of a nightmare trying to get a taxi, we managed to get one but they didn’t know where the hospital was so he wouldn’t take us (that happens quite a lot, you would think they would have sat nav) Eventually we got back at about 7pm, had our dinner and settled down for the night. It was a tiring day as I had to climb up at least twenty steps each time there was something good to see, so I must have climbed 100 steps. Not so easy with a wheelchair.
November 13th, 2007
Jay only has physio this morning. Jay slept until 7am. We went to a local supermarket and bought Jay a pair of trainers, Jay wasn’t in the best of moods today, he was smacking people as we went past, they weren’t impressed and as we don’t speak mandarin, it’s really hard to say anything to them. We hired a carer for 4 hours so we could all go out for our dinner. We went to The Place, Julia and I went there before, it is such a magic place to go, it has a 250 meter long, 30 meter wide skyscreen, the biggest LED screen in Asia, said to have cost some 250 million Yuan. The screen is suspended six stories high (80 feet) above a plaza between two new retail centers. We had our dinner at The Golden Jaguar it was a buffet, the variety was amazing, there was quite a lot that I wouldn’t try like pigs stomach, pigs intestines, pigs feet, chickens feet, and ducks heads. I did try a few things I wouldn’t normally try, like oyster and crab, they were really good. Everything was included even all the alcohol, it cost 238 RMB (£15.90) it was well worth it. We arrived back to the hospital about 9.45pm, Jay was sleeping, the carer couldn’t speak a word of English so she couldn’t tell us how he was, we spoke to the nurse though and she said he was good but kept saying mum, mum, mum.
November 13th, 2007
Jay had his therapies as normal. We went for a walk along the river side. We saw all the fishermen with extra long fishing rods. They just all smiled and got on with what they were doing. Jay very tired and not in a very good mood today. Quite agitated. He was not very co-operative with his therapies or if he was asked to do anything. He was awake till nearly 10.00pm.
November 13th, 2007
Today Jay was up bright and early at about 5.45am, it seems to be getting earlier and earlier each morning it was Grandma’s turn to get up early with Jay today. He is on medication to make him less active but you wouldn’t notice, he still runs rings round us. He had his breakfast and we got dressed and went out walking round the hospital till about 9.00am. He makes his rounds to all the people he likes. He sat next to a nice group of Chinese people in the hospital who let him play with their mobile phone which they set at golf for him to play with. Again we have found the kindness of the Chinese people overwhelming. Jay then got ready for 9.30 and went away to his Physio Therapy with his mum. Her day to spend with Jay. Jay worked really well for Mandy the physio, she is really working on his legs and feet keeping them in a good position, he didn’t work so well for Lilly the OT, Lilly is working on Jays speech, body posture and his hand movements. Jay was a bit quieter in the morning and early afternoon, I think this may be the medication working. Jay had his massage at TCM, he was quite good for him. Jay was full of life after dinner, he walked around the hospital until 8.30pm, he was in and out of the computer room, the café, the front doors, and he was doing his usual running off at any chance he got. We met some new people today, there are lots of patients with all different types of problems, it is very sad to see. It’s 9.30pm and Jay is still wide awake, I don’t know where he gets his energy from.
November 8th, 2007
Jay has spent the day with Julia. He has been in a very good mood today. We started our day with Mandy the physiotherapist. He did everything she asked him to do, with the promise of going for a walk afterwards. He was asked to do twenty sit ups it was hard work for him. He was very good for us.We then went to see Lilly for his OT…He was not having any of that. I think the timing for his visit to the OT was just too soon after having physiotherapy, he was two tired to be bothered so he would not do anything. We then had some time for doing what he wanted to do, He enjoyed his time sitting with strangers and listening to their mobiles. Everybody loves him here. They all know his name. He then went into the computer room where he can play his cd’s on the DVD player. We were in and out of the room for about three hours, he was laughing most of the day. It was such a pleasure to be with him. We then came back to the room where he had three hours of IV He went to sleep about 9.45pm, he had a long day but he was happy and he has such a Character you just have to love him.
November 8th, 2007
Next Posts
Previous Posts
