Amazingly Josh slept really well until 6:20am, and woke us up shouting “Hey, hey, hey” from his cot. Today has been slightly overcast, but still very warm.
As we’ve only got another 4 days off, we decided that we’d go to the Hangzhou Polar Ocean Park, wich is only about 10 minutes away. It was really good, we saw polar bears, dolphins, sharks, whales, sea lions, turtles, penguins, fishes and loads more. It was surprisingly quiet considering its still a Chinese holiday. Josh had his picture taken with a couple of animals, and then fell asleep in his pushchair.
This afternoon Josh has impressed us all again. He now copies what the nurses do when they come and take his temperature. He places a finger in his ear, keeping it there, he then makes a “beep” sound, replicating the digital ear temperature gauge. He also tries to say temperature, which is surprisingly good, and managed to say the nurse on duty this evening, Sophie’s name, she was really happy.
May 30th, 2009
We all found it really hard to wake up this morning. Josh had himself to blame as he didn’t go to sleep until after 1:30am. He sat upright in his cot, singing and shaking the cot side as if he was in a prison cell!
Today was scheduled to be our day off from physio etc with LInds, but still have the stem cell treatment, and tomorrow Josh was meant to have his usual sessions, but none of this made any sense. We weren’t able to go anywhere today, and tomorrow his sessions would more than likely be cancelled because his IV line would still be in, so Linda decided to swap them round for us to make it easier.
Josh hasn’t been in a particularly good mood today. He had a physio session this morning, but wasn’t himself at all. Ant seems to think it was because he knew that he was going to have a treatment today, but I think it’s all got to do with routine. Josh has a set routine here, and if some changes are made, it can mess the whole day up for him.
The nurses came to get Josh at 2:15pm for his last IV treatment. Ant held Josh today, so that I could record it on the camcorder. I wasn’t too impressed as the nurses spent a good 10 minutes digging at his feet for a vein, when we have previously used his hairline. Josh as you can imagine screamed throughout. Mum and I noticed that the sodium wasn’t draining as quickly as it has done previously, and so the nurses proded around with the IV. This didn’t make too much of a difference either, and so then they thought it was because his feet were cold, and so they placed a towel over his legs. Our main concern was that the IV had gone into tissue instead of the vein, but there didn’t appear to be too much swelling on his foot. We sat in the Infusion room for over 2 hours, and saw 2 other patients come and go…
Since coming from the room, Josh’s mood hasn’t improved. He’s picked at his food, but has managed to have some milk before nodding off at 7pm, I think we’ve got a late night/early morning ahead…
May 29th, 2009
We all had a good night’s sleep again last night. Josh was woken up by us at 8:15am, had his milk and was changed before starting his electrical wave therapy. He was a really good boy again, the strength has doubled since we arrived and he really isn’t that bothered about it anymore.
Josh had his breakfast and then started his standing session. He lasted 25 minutes without any music playing at all, just chewing away at a plastic sweetcorn toy – I’m sure people here think we don’t feed him!!
We then headed over to the Holiday Inn where Nannie, Dad, Chris and Ben were leaving for Shanghai today. There were a few tears all round, but we should be seeing them in just under two weeks. We are certainly really happy that they all came to visit us, and were really glad of their company. I am so pleased that Nannie who is 80 years old and made this trip in particualr. She also made the trip with ease, and I hope that this is the first trip abroad of many to come. She was extra pleased that Josh called her “GG”, (which stands for Great-Grandma) yesterday for the first time. This trip has cerrtainly been an eye-opener for all of us, we have all seen a few sights and scenes that have shocked us all, but thank you all for coming.
The rest of us have had a quiet night in, watching a film and eating McDonalds. Josh has his 6th Stem Cell Treatment tomorrow which is by IV, so hopefully not as traumatic as the lumbar.
May 28th, 2009
We all had another good nights sleep last night. Josh fell asleep at 10pm last night, and woke up himself at 8am, we’re so impressed. He was in a really good mood again, which got even better when Nana and GG arrived at the hospital this morning.
Josh was really good during his electrical wave therapy again, and again for his standing session. He seems to be lasting longer each day in the stand, although he does get a bit bored at times, gives out a little cry or tries to sit down.
Us girls then had a trip to Hangzhou, and visited West Lake which is absolutely huge. We saw some beautiful buildings, and some gorgeous views over the lake. We also saw a lot of brides and grooms who were having their wedding photographs by the Lake, they were dressed beautifully. We had a short break in the Hyatt Hotel, which was stunning. Jack our hospital driver told us that it cost about 1500RMB per night!
We arrived back at the hospital to see the the last few minutes of Josh’s physio session. Ant told us that he rolled unaided and with ease. He also seems to be far more adventurous now with trying to climb and move around himself. His confidence on his feet has also improved dramatically, as now he lets go of our hands or pushes us away, even though he does fall over sometimes!
We’ve all had a last meal together in the hotel, before Dad, Nannie, Chris and Ben leave tomorrow. It’s been so nice having them here with us, we’re so pleased they came over. They’ve all noticed small changes in Josh, including his better appetite, increased vocabulary, improved mobility as well as the changes with his pupils.
May 27th, 2009
Josh finally went to sleep at around 4:30am this morning. He was in a very good mood, and was quite happy to be sat up, held and to stand up, so different to the last spinal.
Because he had so little sleep, we decided to let him sleep in a little later than usual, and so he had a lie in until 9:30am. We told Linda that he had a bad night again, and she said that it’s quite normal after a spinal, and its best for him to rest.
Dr Hong came to see Josh this morning, to see how he was getting on after the treatment. She examined him, and said that there was again a slight improvement with the pupils dilating when the pen light was shone in his eyes, so we’re all very happy about this.
This morning, The Boys - Dad, Ant, Chris and Ben met up with Li Fan, and went to visit West Lake, Hangzhou. The Girls – Nannie, Mum, and Me, and Josh of course stayed behind in the hospital, as Josh wasn’t allowed to leave because he still had the IV line in his foot.
Josh’s standing and physiotherapy had to be cancelled also today, because the IV had not been taken out until late this afternoon, and Linda was unable to continue with the sessions, so Josh had the whole day off in the hospital room. GG and Nana kept Josh amused, and he was very happy with all of the attention, but it was a very long day just sitting in, and not even being able to walk to RT Mart.
The Boys had a good time in West Lake, and saw a lot of the ancient statues. Thankfully the weather cleared by the afternoon, and they were able to see the beautiful scenary by the Lake.
Everything should be back to normal tomorrow. But tomorrow is also Nannie, Dad, Chris and Ben’s last day before they travel back to Shanghai and then home, and so we’re going to go out for a nice meal together before they leave.
May 26th, 2009
We all woke up early this morning, so that Josh could have milk and toast before his 8:30am, on his arms and legs. Josh gave a little cry at the beginning as the gel on the pads were so cold!!
His standing treatment went better than usual, and he lasted the whole 50 minutes, I must add that this was helped by the arrival of GG, Nana and King! He then cuddles galore from them, whilst we all tried to distract him from food, as he seemed to be chewing harder than ever on his plastic toys! GG and King left the hospital at 12:30pm, as GG didn’t want to see Josh being put to sleep, and we were all worried she would get upset.
At 2:00pm, nurses Amy and Casey came to the room to put the line in Josh for his drip. Again because of his hidden veins they had to prod and poke him a few times before getting the line in. Josh got really distressed and was sobbing for around 30 minutes later, and even after he fell asleep. He was late going down to theatre because they were very busy, and Josh’s treatment wasn’t a priority. Only two people are allowed to go down to theatre with Josh to see him in, and so Mum and I went this afternoon. When we were down there waiting, we saw a woman come out of theatre holding a newly born baby, so small and cute. We all then anxiously waited back in the room for Josh to return, which he did within 50 minutes. He was still asleep, with both arms behind his head, looking very comfortable. He was soon disturbed by the nurse taking his heart rate and blood pressure. We then had to give him a dose of medicine orally to prevent him being sick. Josh sobbed away for a few minutes and finally fell asleep. He slept for a good hour and a half, and woke up in a bit of pain. He was then given a Chinese version of calpol paracetamol orally, which sadly he coughed up as he was lying down. He spent the remainder of the 6 hours playing with toys and singing with us, very happy indeed. I think we’re heading for a long night, but the main thing is that he’s not in any pain now, and that he’s comfortable.
May 25th, 2009
Everyone had a good night’s sleep last night, apart from Chris and Ben who woke up at 11pm last night, and couldn’t go back to sleep!! Ant, Josh and I checked out of the hospital this morning and walked over to the Holiday Inn. We all had a full English breakfast, which was absolutely gorgeous! We then decided to head over to Hangzhou Outlet which was in our visitor guide, as it looked to have a few shops for us to look around.
When we arrived there, we were a bit concerned that the shops were closed as it was so quiet, but we soon found out that it was so quiet because the shops were designer and the items for sale cost a fortune! We had a good look round though!
The boys got a bit bored and so decided to go for a wander around the Outlet, where they found Hangzhou Paradise, which was a mix between a Disney theme park and Alton Towers. Chris and Ben decided to go on a water ride inside the park, and they were also the only two not to wear the ponchos to keep them dry, boys will be boys!!
Josh, Ant and I headed back to the hospital for 2pm, as the anaesthetist was visiting us before tomorrows treatment. We had to sign the relevant paperwork, and for him to examine Josh to make sure he’s not picked up an infection.
This evening, we have had a KFC delivery, as we’ve not been able to leave the hospital before Josh’s treatment tomorrow. We’ve also made sure that Josh has had plenty to eat and drink, as he won’t be allowed anything to eat or drink after 8:30am tomorrow.
May 24th, 2009
We had a lovely lie in this morning until 9am, and then slowly made our way towards the Holiday Inn Hotel. It was raining heavily this morning, and was really misty. Mum was sitting in the foyer, anxiously waiting for Dad, Nannie, Chris and Ben to arrive.
Shortly after 11am, they pulled up in Jack’s 4×4 outside the hotel. Nannie had the biggest welcome from Josh, who didn’t want to be taken out of her arms for ages, which really pleased her. Nannie looked really refreshed despite being up since 3am (UK time) Friday morning and not sleeping on the aeroplane or from Shanghai Airport. Dad and the Boys looked very tired. They had all slept for a short time on the flight, and then Ben had also slept on the journey from Shanghai. Everyone else had watched Mr Bean The Movie in Jack’s really nice car, which had a TV screen on the front dashboard and on the rear headrests – very nice. We all went down to the Holiday Inn Restaurant for some lunch. We all really enjoyed it, but Ben didn’t have much of an appetite and left most of his behind. Ant, Mum, Josh and I all then left the hotel for a couple of hours to give them all some space let them settle in, unpack and have a little nap.
This evening we had been unable to wake up Chris and Ben who were both shattered. Nannie didn’t feel like she wanted an evening meal, and so the rest of us went down to the restaurant for a Chinese buffet. Mum tried eel tonight, and Ant had some lobster and crab! Dad and I played it safe and had a really nice lamb chop each, we’re not as adventurous as them!
Hopefully they’ll all have good nights sleep, and feel up to doing a bit of sightseeing tomorrow.
May 23rd, 2009
We all had a really good nights sleep last night, and Josh had to be woken up this morning.
He was a little trooper this morning for his electrical wave therapy, and Linda was very happy with him. The doctors came to visit us on their rounds, and the doctor examined Josh. He believed that he had slight light perception in both eyes. I saw his eyes move towards the pen light in a sort of twitching movement (so happy!). I also asked the doctor about the advantages of using spinal as opposed to IV. He simply said that the stem cells work best in a mix of spinals and IV’s, which is why Josh is being given 4 spinal and 4 IV. The only reason they would amend this arrangement would be if the patient was ill following the spinal. Josh has been very lucky so far with all of his treatments, that he had not developed any adverse side effects. Ironically, we found out today that one of the side effects of stem cells is hyperactivity – maybe this is one side effect that Josh has!!!
Josh lasted almost the whole 45 minutes in standing session this morning, which must be a record! He was fed toast throughout again, and had his music playing.
We had a walk to the supermarket to get some groceries, as we’ve realised how busy the RT Mart gets over a weekend, definetely a place to miss, as we get stared at enough as it is!!
Josh’s physio session wasn’t as good today, we’re not sure if it was because he was tired as he didn’t have a nap, or because Ant was filming it?! One thing we did notice is that he knows when and where to switch the crocodile tears on, and off once he has cuddles from us or Linda. It’s so difficult to get cross with him, I’m useless!
Hoping for a lie in tomorrow as we’ve got the weekend off. Will head to the Holiday Inn for midday to meet GG, King, Chris and Ben who should’ve arrived by then, yippee!!
May 22nd, 2009
Josh managed to stay awake until 4am this morning. He was put into bed at 11:30pm after his bottle of milk, and after listening to Beverly Hills Cop (he loves the music!). He then kicked the duvet off and sang, danced and shook the cot bars as if they were jail bars! Nothing would settle him, he was really happy and wide awake. We decided to leave him, and stayed quiet in the room, hoping that he would get tired and fall asleep, but he didn’t. I got into bed with him at 1am, and tried to get him to sleep, but this didn’t work either. I ended up giving him another full bottle of milk, and still he stayed awake. I nursed him in my arms for about 30 minutes, and then I placed him back in his cot… still awake, whilst Ant and I ended up falling asleep ourselves! I kept waking up every 30 minutes or so, and looking over to his cot, and at 4am I finally saw him on his side fast asleep.
I woke Josh up at 8:30am, as I knew Linda would be coming for his electrical wave therapy soon after. As I started to wake him up, Linda knocked at the door. I explained that he didn’t go to sleep until about 4am, and she took one look at him and said “I can tell” laughing, and so we re-arranged his therapy. He was so sleepy, and really wanted to go back to sleep. I got him up, fed him and dressed him ready for Dr Hong’s visit. She examined Josh once again with the pen light. She thought that his left eye blinked when she shone it in his eye. I have yet to see Josh follow a light, but Josh is quite difficult to examine, because he’s forever moving his head from side to side in excitement, and its difficult to tell if his eyes are moving because he has seen a light or simply because he happened to move his eyes to the direction of the light. If Josh had been older, it would’ve been easier as he would be able to tell us, but at the moment we are watching his every movement for any changes!!
Josh had his electrical wave therapy at 11am because he was so sleepy earlier, and did really well despite him being so tired. After this had finished, we had a nice walk to the People’s Square, which is a large public garden. It is beautiful how they’ve landscaped the gardens, with borders of very pretty, colourful flowers. Josh thankfully fell asleep around 5 minutes after we left the hospital, and stayed asleep for a good hour and a half.
His physio session went well again. We had a few bursts of tears throughout, but these were mainly crocodile tears for some cuddles!! He managed to stand alone unsupported this afternoon for 17 seconds, which we were all really impressed with. He did show off again a couple of times by standing alone, and trying to dance at the same time, by bending his knees and shaking his little bum, cheeky monkey!!
Ant made sure I only gave him one small chocolate bar tonight, just in case we had a repeat of last night!Despite him having a nap at lunchtime, he has fallen asleep nice and early (for Josh) at 10pm, so hopefully we’ll all have a better night’s sleep tonight.
May 21st, 2009
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