Jay felt slightly better this morning, he didn’t want to eat again, I took him to the computer room and he lay down and watched his DVDs, the Doctor said he would probably feel dizzy and have a bit of a sore head still that’s why he feels better lying down. Jay slept most of rest of the day. He didn’t have any PT or OT today but I did take him to TCM for his massage.
Add comment November 28th, 2007
Jay awoke at 5.00am and was still in a lot of pain, I called the Doctor and she gave him an injection for the pain, he still wouldn’t eat all day so I called the Doctor again and he gave him fluid in his IV to give him more energy, Jay was also sick today so I called the Doctor for that, he gave him something in his IV to stop him being sick. Jay likes someone to lie beside him at all times, it’s more tiring lying about than actually doing something. We all have stayed in the hospital since Jay has had his stem cell injection as he as been so ill. Jay has been so ill that he doesn’t even want his DVDs on. It wasn’t a very good day again, fingers crossed he will be better tomorrow.
5 comments November 26th, 2007
Jay was awake at 5.00am. He would not go back to sleep so Grandma got up with him at about 6am they got dressed and went walk-about the hospital. They ended up in the computer room as normal watching his videos but he was not happy, he was in a lot of pain. We managed to stay away from the room till 9.00am to give mum and Julia a rest. He was visibly in pain and the nurse sent for the doctor and again he was given an injection to relax his muscles. He slept for about 2 hours but was in lots of pain when he awoke and tried to walk. The doctor returned and gave him an injection this time for pain, he fell asleep for a few hours and seemed a good bit better. He was put on his IV when he was sleeping so when he woke up he knew he couldn’t get out of bed as he was attached to his IV. He has been kept in bed all day to help the pain. It has been a really long day as I’ve (Nicola) had to lie in bed all day with Jay watching the Singing Kettle (I’ve watched it that much, I’m dreaming about it). Jay is even off his food, he is normally a really good eater. Everyone else I have spoken to hasn’t had any pain where the injection was, some people get a bad headache, so I think Jay has a headache as well as a sore back. Jay missed out on a trip to an indoor play area for children today as he wasn’t well, it was organized by the co-ordinators at the hospital for all the children. Poor Jay I hope he gets better soon.
8 comments November 24th, 2007
Jay was awake at 4.00am screaming in pain, the nurse gave him a pain killer but the doctor had to be called, he was then given an injection and Jay fell asleep from 5am – 7.00am he did seem a lot better when he got up but he squirmed in pain when he moved a certain way. Trying to keep Jay resting most of the day was a nightmare. He wanted to go out of the room but he was very tired and would not sit down. He didn’t have any therapies today so the day seemed to last forever. This day was one of the toughest grandma has had yet. It was easy when you could go walking with him before the stem cells but when you have to try and keep him still, just is nearly impossible. I now know how Jay managed to overcome his prematurity and all the infections he had thrown at him when he was first born 13 and a half weeks early just weighing in at 2lb 2 ounces, it was his sheer grit in his nature that got him here where he is today and hopefully this sheer grit will get his stem cells working and get him walking better and communicating to make his future better for him.
Add comment November 24th, 2007
Jay had his first stem cell injection today, they came at 9.20am and took him to the operating theatre, he came back at about 10.30am. He then had to lie with his head flat on the bed for 6 hours (if you know Jay, you can imagine how hard this was). He was given a small injection to help him rest which didn’t really work. He continuously tried to get up, he eventually fell asleep at 2.30pm – 4.00pm, when he woke up he was in a lot of pain. I called for the Doctor, she gave him a pain killer and said it will hurt where the needle was put in. He settled for 5 minutes on and off for about 1 and a half hours, then he was in a lot of pain again, screaming with pain (not very nice to see) I called the Doctor again, she said he couldn’t have anymore painkillers as he had already had some, she also said it would be sore for Jay as they have to try several times to get the needle in the correct place as Jay had an abnormal spine. We managed to settle him for a little while. She said she would give him something to help him sleep through the night but that’s all she could give him. It has been a very hard day. It is now 8.00pm Jay has been awake for some time and if he stays in bed he doesn’t seem to have any pain. He has just dropped off to sleep now, hopefully he will sleep all night.
3 comments November 23rd, 2007
Jay had physio. this morning, Julia had him today, Jay was very tired today as he had been awake through the night, he got up at 2.00am and jumped into bed with his grandma he then got up at 6.30am, Grandma got up gave him his breakfast and took him out so Nicola and I could have a lay in. He did not do well in physio, he doesn’t like it as Mandy stretches the insides of his legs and it really hurts. We went for a walk round the hospital as Jay likes waving and sticking his thumbs up to everyone. Even though he plays up, he makes up for it as he has a very special gift, of making you laugh and gives so much love. Nicola went out today and bought him some new C/D’s to amuse him. But Jay was not all that interested. He is now having his IV, and listening to his DVD. He looks very happy at this moment but the noise from the dvd is very loud. I am now going to switch off and watch a video and have a glass of wine.
Add comment November 23rd, 2007
Jay had his therapies as normal, I think he’s getting really fed up with them all, he has to be bribed all the time to do anything. Nothing new to report today.
Add comment November 23rd, 2007
The Doctor came in this morning and said Jays stem cell injection has been changed to Thursday as they can’t get the cells from the Lab, this was a bit disappointing as we were all set for them. I have been given three dates for three injections, 22/11/07, 2/12/07 & 12/12/07. Jay had therapies as usual today. He was in a lot better mood today so he worked a lot harder at physio and OT. Grandma and Jay went for a long walk again trying different walks to learn more about the area. Julia and I went to Silk Market (clothing market) to do some shopping, there was stall after stall of fake designer clothes, bags, shoes, purses, sunglasses, pretty much anything you want. They start off at prices like 800 RMBs and you can bargain them right down to 30RMBs sometimes. Bargaining is a must.
Add comment November 20th, 2007
Jay had physio this morning, Julia took him, she said he would not do anything he was told, he was a bit of a naughty boy all day today. We were all too tired to do much today after our walk yesterday. Jay and Grandma went shopping for veggies and fruit. They went down little back roads and saw much more of the real China. It was exciting to see just how they all live. They are very simple, nice people working really hard and getting on with their lives without much fuss. Little shops appear outside little houses, lots and lots of fresh fruit and vegetables mostly. After a long walk Jay was back in his room. Grandma went shopping for food to Wal-Mart with one of the ladies from Australia. Then we all went to bed very tired.
Add comment November 20th, 2007
Jay has no therapies today. We hired a carer to look after Jay today so we could go the Great Wall of China. We went with a few of the people staying here they had organized a tour guide. We left at 7.30am it took about 1 and a half hours to get there, we then climbed a part of it to the top, it was really good but very tiring, it was just climbing stairs continuously. Amazing views from the top.
My mum got talking to a man from Canada who turned out to be a nephew of the scientist earnest A McCulloch from Ontario who was one of the scientists who discovered stem cells. How weird is that? We have his email address and he has asked us to keep in touch and let him know about Jay and the results from the stem cells as he said his uncle would be most interested to hear, though he is in his 80′s now.We then were taken to visit a cloisonné factory (copper based items enameled over the top) some very nice items but very expensive. We then went for our lunch which was really good, about seven dishes were put on our table for us all to try different things, all of them very nice. We then went to a jade factory, we were shown how to tell if it was real or fake and shown some really nice pieces, again very expensive. We then went to visit a chinese family (Mrs Wong, her mother, her husband and son) she made us tea and gave us fruit. On the way back we stopped outside the Olympic stadium so we could take photos of the outside of it, it looks like a metal nest, we also saw the swimming one and the cycling one, all very nice for the Olympics 2008. When we arrived back Jay was very exited to see us, the carer didn’t speak any English so we couldn’t ask her how he was but Jay was happy so I could tell he had a nice day. I think she just let him do what he wanted and just followed him around, so he would have been delighted. We all had a really good day.
3 comments November 18th, 2007
