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We all had a very good night’s sleep last night, as Josh didn’t wake up at all between 11pm and 8am! He was in a good mood once again, which Linda was happy about. He had the electrical wave pads placed on him with no problems, and sat there happily for 40 minutes with them on.
We could tell that Josh’s back was still a bit tender, from the way that he was holding himself, an so Linda decided to cancel today’s standing session.
The weather today was very familiar, wet and cold, just like home! We had a walk to the RT Mart as we’d been stuck in yesterday. Josh wasn’t too happy to have the raincover on his buggy, but it was quite drizzly.
Josh had his physio session a bit earlier today than usual. He at first enjoyed it, and was really happy with himself at being able to roll over a lot easier again today. Linda then started his usual “up” and “down”, but Josh didn’t enjoy this at all and stated crying. We can only think that he must’ve still been in a bit of pain, and was a bit scared to do the exercise. He soon had some milk and fell asleep for a couple of hours.
He has been full of beans this evening, Ant thinks its because I’ve given him chocolate (oops)!! He hasn’t stopped laughing, dancing and singing. He’s had a nice bath, which we thought might relax him before bed, but he didn’t stop splashing, and now theres water all over the floor!
We all can’t wait for the weekend, as Josh’s great-grandma (or GG as she is known), grandad (or King as he likes to be called), uncle Chris and uncle Ben are coming to see Josh for the week. He has got so excited when he has heard their voices on Skype, and has not really understood why they’ve not been in the room with us! See you Saturday!!
May 20th, 2009
Josh had a terrible night last night. He didn’t sleep very well at all, and kept on waking up and crying at least twice every hour, wanting to be held by his mum and dad. He thankfully kept his milk and toast down, which he scoffed at 21:30pm!
We could tell this morning that his back was still sore from the spinal, as he moved very slowly and was delicate to touch. His appetite was again good, and he has not displayed any of the side effects from the spinal. The pain in his back is quite normal, but it’s so much harder with a 22 month old to an older child or adult, as you can explain things to them, and they can also tell you if they’re in pain etc.
Linda decided to cancel all of his treatments today, to prevent upsetting him and to help his recovery, which we were all pleased about as Josh has had a traumatic day yesterday. Dr Hong called in on us this morning and was pleased to see Josh sitting up on the bed playing with his musical giraffe.
Josh had a nice nap for a couple of hours in the afternoon, which he (and we) desperately needed. He has been a very happy boy since waking up, and has been busy playing with his toys and listening to music. He’s had a lovely soak in a bubble bath this evening to hopefully ease his back pain, which he loved splashing around him.
We hope to have a better nights sleep tonight, and that Josh is feeling better again tomorrow.
May 19th, 2009
We had an early start this morning as Josh wasn’t allowed any fluids or solids for 6 hours before his spinal stem cell treatment. So we managed to feed him up with a full bottle of milk, and 2 slices of buttered and vegemite toast squares just before 8:30am!
This morning, Dr Hong and other doctors came round and examined Josh. They closed the curtains, and made sure all the lights were out in the room, and the doctor flashed his pen light in Josh’s face. All Josh did to begin with was laugh! The doctor then moved the pen light towards his eyes, probably about 5cm from the eyes, and moved it left and right. The doctor then said out “He followed my light!”. I couldn’t believe it, and the doctor told me that this was very good, and that he hoped that this afternoon’s treatment would improve it even more. How exciting!!
Josh behaved very well for his electrical wave therapy today, and didn’t seem too fussed when Linda placed the cold gelled pads on his legs and arms! His standing session unfortunately wasn’t as successful! He completed about 10 minutes of standing, and then a young girl was placed in the bed next to him, and when she started crying, Josh decided to join in! After about 5 minutes of tears, Linda decided to call it a day.
We went for a short walk to the RT Mart then to get some milk and bread. It was nice to get a bit of fresh air again, as we realised that we could be stuck in for the next couple of days.
At 1:45pm, the nurses called us in to the treatment room, for an IV line to be put into his foot, for the glucose. Josh was a star, and only cried for a couple of minutes, he must be getting used to becoming a pin cushion! At 2:25pm, Josh was wheeled down to the 3rd floor, which is the theatre floor. He was greeted there by Sid, the Lead Patients Co-Ordinator and Dr Hong. They explained that they would be giving him anaesthetic to put him to sleep, and that it would burn for a few seconds, and then he would drop off to sleep, which he did. He looked so small in the big cot bed, so cute. We were told to return to our room, and that Sid and the nurses would bring him up when they had finished the lumbar puncture. Mum, Ant and I sat in the room, trying to read our books and making small talk, whilst all we could think about was poor little Josh. He was brought up to the room at around 3:30pm asleep. The nurse then checked his blood pressure, heart rate and temperature, and unfortunately he woke up. Because of the treatment being in his spine, the doctors had advised us that the chances of him suffering with the side effects were higher, and that he was to lie on his back for 6 hours, Because he woke up crying on and off for around 20 minutes, the doctor decided to give him a dose of valium to calm him down, and that he may fall asleep. The valium had the reverse effect, and Josh has been SO happy kicking away in his cot, and singing along to his music! The nurses have crept in a few times, expecting him to be asleep, and have been surprised to see him still wide awake and really bubbly. I must say its a big relief to see him wake up like this, I was dreading 6 hours of keeping him flat on his back and him screaming. He’s done 4 hours and a half so far, and so an hour and a half to go. Mum, Ant and I have been taking it in turns to sit next to the cot and keeping him entertained, thankfully Ant’s not singing along to the music!!
I’ve also just had a radio interview for Radio 4 show “You and Yours”, which the topic for discussion today was “Stem Cell Tourism”. I was asked about our situation, why we had decided to travel to China for stem cell treatment, and did we think that we’d researched the stem cell procedure thoroughly enough. They were then going to be speaking with a representative from UK National Stem Cell Network, who would no doubt be poo-pooing us coming out to China. There is also a television programme on the BBC Panorama tonight about Stem Cell Treatment, which dad will be recording for me.
May 18th, 2009
Today has been pretty uneventful. We had a lovely lie in until 9am, and then went across town to mum’s hotel. We had a look at a shopping mall which is practically next door to mum’s hotel. We didn’t buy anything, this was because the sizes here are so small!! Had a nice buffet lunch in the Holiday Inn, which was very good.
We walked back to the hospital in the early afternoon, just in time to meet the anaethetist to meet us. Josh is due to get his 4th stem cell treatment tomorrow afternoon, but this one is going to be via a lumbar puncture. Because of Josh’s age, it is not possible to get him to lay still for the procedure to take place, and so he will be put to sleep for the duration. They’ve advised us that Josh is more likely to experience side effects such as headaches, fever and nausea, and that its highly recommended to lie on your back for 6 hours after the treatment. I have asked the nurses if its possible for them to keep him asleep for this time also, mainly because Josh is certainly far more mobile since we’ve arrived here, and keeping him still for that amount of time would be very difficult. We’ve got everything crossed for tomorrow!
May 17th, 2009
We all had a good nights sleep last night, and woke up at 7:45am by Josh singing in his cot. The cleaners were knocking on the door not long after. I think everyone else on this floor must’ve put the “DO NOT DISTURB” sign on the door. There are two cleaners for the 20th floor, as we’ve seen them everyday since we’ve been here. They are very friendly, and always greet us with a “Good morning”, and come and talk to Josh and call him a beautiful boy.
Linda was also early this morning, and his electrical wave therapy didnt seem to bother him too much as he was listening to Ant’s mobile phone songs. Shortly after this, Josh had his standing session, which he did remarkably better at. Not sure if this was because the physio room was practically empty, or because he was being fed small squares of toast with vegemite (probably the latter!!).
Ant and mum cooked us scrambled egg on toast, with fried ham (as we can’t find bacon), which was different! I don’t think it’ll be a meal we’ll be cooking again for some time, the scrambled egg caught because the hot plate temperature is too hot, and the ham was horrible.
Josh’s physio session went well again today, but he must’ve exhasted himself, because he fell asleep as soon as we got back to the room!
We’ve had a lovely Chinese Buffet at the Holiday Inn tonight to celebrate Ant’s birthday, it was very tasty. Ant and Mum tried a few fish dishes which they’ve not tried before, but I stuck to what I knew (I’m so boring).
I would like to wish Ant, my best friend Catrin, and my great Uncle Albert a happy birthday today, and hope you’ve all had a good day. Ant is upset as he signed up for Spurs TV online last week hoping to see Everton v Spurs, unfortunately the live screening does not work here, and so he had to make do with the text updates!!Ant has already said that he’s going to stay up til midnight to watch the live vidiprinter with the scores, how sad!! I hope spurs win tonight or he will be miserable all day tomorrow (ha ha). Come on Spurs!!!
May 16th, 2009
Today has been a nice day off, we’ve had a lie-in (well until 8am), nice walk in the sunshine and had a lovely meal.
As we are all craving a bit of Western food, mum and Ant decided to find some ingredients in the supermarket and cook us a nice “homely” meal. They found some meat, that looked like Pork Chops, lovely fresh broccoli and carrotts, and potatoes, which they made mashed potatoes out of. They spent little over an hour in the hot and steamy kitchen, but it was worth it.
Josh has rolled over from his back to his front, and from his front to his back on the bed this evening without any help from us, so he and we were really pleased with him. I hope he’s able to show Linda again tomorrow. He has his usual sessions tomorrow, and then another day off on Sunday.
May 15th, 2009
Sorry for the delay in writing today’s blog, we’ve had a few internet connection problems.
Josh (and us) had a terrible night’s sleep. He slept from 11pm until about 2am, and then kept waking up every 15 minutes or so, crying. He had a bottle of milk with Calpol in it, and then was wide awake! The nurse came in at 3:30am and took him to the nurses station and played and sung songs to him. He came back to the room around an hour later, but was still just as lively. I ended up getting in the cot with him (it’s a big strong cot, not like home!!). We fell asleep at around 6am, until 8am when the sound of Ant’s mobile woke him up.
Because of his bad night, Linda decided to skip the electrical wave therapy and standing session, and hopefully he would’ve caught up with a bit of sleep during the day to be ready for his physio in the afternoon as usual. Mum, Josh and I had a walk for some fresh air, and hoped that he might fall asleep. We then went to the RT Mart, and couldn’t believe that Josh was still awake.
His physio went well again, his rolling has really improved, and he’s so proud of himself, the smile on his face after is a picture. There was a young man aged in his early 20′s next to Josh this afternoon, who has been here for about 2 weeks aswell, who was brought into the hospital in a wheelchair, and actually walked today. He stood up after his physio, and whilst being supported by his sister, walked back to their room, how fantastic.
We had an early tea, which was a Chinese take away. A young lad brought the food in at 4:45pm, balanced on two trays. We had a mixture of 3 different meals, so that we could try new dishes, and some spring rolls. The total for the food was only 55RMB, which works out to be around £5.50, what a bargain.
Also spoke with Chris and Dad at home, as it’s my brother Chris’ 19th birthday. Josh was so pleased to hear their voices, and became too shy to say anything, but showed them his “up” and “down” movements he’s learnt in physio. Dad had just cooked Chris a Full English Breakfast, which we are all very jealous about. We haven’t seen any type of bacon in the supermarket here, even though we’d probably be a bit scared to try it anyway!! Happy Birthday Chris!!
May 15th, 2009
Josh was very well behaved this morning for his electrical wave therapy, he didn’t cry or grumble once. I hope he’s getting used to it. Linda called us through for standing not long after we finished, ready for his standing session. We carried his music through and started to play his nursery rhymes. Josh lasted about 2 minutes on the stand, before throwing his set of keys in one direction, and an empty bottle in the other, and starting to scream. Linda quickly got him out of the stand, and handed him over to me. Once he was in my arms he stopped crying, cheeky monkey!!
Josh’s 3rd Stem Cell Treatment was at 2pm, and we were called to the Treatment Room shortly before time. I explained to the nurse that the nurses have had difficulty finding veins in his hands and feet, and that they used one in his forehead last week, and so she agreed to use a vein in the forehead. With the help of a couple of other nurses, they positioned him on the trolley, each holding him, and singing in Chinese to him. The nurse had to shave a small amount of hair on his forehead for her to get at the vein properly, and then inserted the IV quickly and painfully. Josh was far more relaxed today, and nestled in my arms and had the sodium and stem cells. He then slowly drifted off to sleep in my arms, and slept for almost an hour afterwards.
He has been as happy as ever since waking up, and I think the stem cells must make him very hungry, as he’s been eating everything. He finished his tea, had some segments of apple and has then had 3 small Cadbury’s Chocolates (but we made sure daddy didn’t find out!).
May 13th, 2009
This morning I felt like I could’ve stayed in bed. The alarm sounded at 0745hrs, and I managed to snooze it twice before dragging myself out of bed. Josh wasn’t particularly late going to sleep last night either, as it was around 2300hrs, just before I did.
Josh was in a rather grumpy mood when he woke up, and didn’t finish his milk or toast. He was very good during his electrical wave therapy, and the forty minutes passed by very quickly.
His standing session was unfortunately not as successful! He screamed almost as soon as he was put in the stand. He was really not in the mood for this, and so Linda cut the session short after around 20 minutes.
The weather today has been humid, misty and quite dull looking, and it started to rain at midday. This meant that our short daily walk to the RT Mart or park was cancelled.
Josh performed well during his physio again this afternoon, and I actually managed to record him dancing away. His rolling was better again today, and he actually managed one roll by himself. His standing and sitting was also very good. I think he made Linda’s day by saying her name, so well done Josh!
Tomorrow we have Josh’s 3rd stem cell treatment, which is also going to be via IV. Hopefully they will spare Josh and us the discomfort by using a vein in his forehead again, as this was a lot easier for everyone!
May 12th, 2009
Josh woke up crying hourly last night, which was tough especially as he didn’t go to sleep until well after midnight. He woke up at 8am, and was fairly happy, despite a disturbed night.
Linda came into our room at 8:45 am placed the electrical wave pads on Josh’s legs initially, and fortuantely he didn’t give up too much of a struggle, especially being that he hasn’t had them for three days. He is kept entertained by his nursery rhymes, which he sung along to.
Shortly after his electrical wave therapy, Dr Hong and her colleagues visited us on their rounds. They closed the curtains and examined Josh with a pen light. They confirmed what mum and I had seen, that the pupils are dilating, and working together. The doctors did have difficulty in examining him as he was jiggling about to his music, and Dr Hong said that she thinks he’s a musician in the making! I am so pleased that they have confirmed what we had thought, and for these improvements to have so early in the treatment which is really positive. I hope that we see similar improvements on his next treatments, but I’ve also got to be realistic and not hope for too much.
Josh had standing session next, which was slightly better than last week. Linda adjusted the straps so that Josh was only being supported by one leg strap, with the other leg bent and on a step. Josh seemed to like this better, and it also worked on his balance.
We had a short walk to the RT Mart again after lunch, but it felt even hotter today than the last couple of days. We would’ve liked to have gone as far as the park again, but the heat was unbareable.
Unfortunately Josh didn’t have his afternoon nap, and we had reservations about his physio session, but Josh began very well. Linda massaged his arms and legs, and then started practicing rolling over on his side. Ant put his mobile phone songs on as an incentive to get him across the table, which worked well!! He seemed to be rolling far better than before, and Linda was really happy with him. He then showed off his dancing skills to everyone in the physio room, and had a crowd of physiotherapists, parents, children and nurses around him watching him dance, clap and sing to Akon featuring Colby “Beautiful”! What a little performer! After tiring himself out with his dancing, he struggled with the swiss ball exercises.
Mum and Ant cooked us an evening meal of Spaghetti Bolognese, and homemade garlic bread, which was really very tasty. There are two kitchens on this floor, one small one for cooking, and a second for storing kitchen equipment and food. They struggled at first with their electric hot plates, as they are not like what we’re used to back home. The socket on one of the hot plates started sparking at one point, but they soon worked round it. We had been a bit concerned about picking the mince in the supermarket, as they didn’t look like the ones at home. In the end we managed to find a sealed pack, but they also sold it loose, which you use a scoop and put it in a carrier bag (didnt fancy the look of that), but it turned out to be very tasty, well done mum and Ant.
May 11th, 2009
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