Archive for January, 2007
I write this as I lay thawing out with my frost bitten fingers.
From the warmth of our room we stood and glanced out the window. The sun seemed to be doing its job and the sky was an illuminated blue, it was the wind that was working against us. Though we would not find this out for another hour or so.
Mum organised the van and we invited our American friends, Don and Candice to join us on or adventure to the Forbidden City. It was a pleasant drive, only a short 20 min trip from the hospital and it seemed like we travelled back through time. Halls, Pavillions, Marble Railings, Red Walls and Yellow Tiles occupied the innter walls of the Forbidden City.
Our gentle stoll quickly turned into a scurray for warmth, or anything associated with it for that matter. The wind chill was boardering unbearable and the thought of turning back was like the beach on a nice summers day. Except we had one problem. Our driver who can’t speak a word of english, organised to pick us up on the other side. A quick 1 km work to the other side, that’s what we thought.
The start of our journey had all the comforts you need when pushing a wheelchair; ramps. This was to come to a crashing halt. Mum and I tackled a flight of stairs hurling Adrian up one by one, thinking it was a one off. Then down the other side. Then up again, with the hope of a ramp in our minds. Nope. Then down again. This was to continue for another 4 hours.
We visited the Hall of Clocks and the Treasure Hall, both were filled with ancient treasures and timeless pieces. The site of the back gate came as a relief to us all, there were no more stair, only a flat path. We discovered a quiet little cafe with the help of our guide and sat drinking coffee, resting our legs. This is were our adventure ended. Back to the hospital it was for us.
January 29th, 2007
My usual morning grumpiness was met with a ceasless smile, Blaz had reached 21. Our morning was pretty much same old same old. We began with an hour physio session, followed by acupuncture and massage. We celebrated as best we could and made the day special in its own way.
We took the afternoon off from the rehab duties and booked ourselves a van for an outting. The day before we decided if the weather was sweet we would go to Houhai for a walk and a bit of a chillout. In the essence of the 18th it turns out no matter what country we are in, the sun is out in full force.
An hour before our van and driver arrived we were approached with the question of weather or not we would be interested in talking with a journalist (Bruce), who was writing an article on Stem Cell. We chatted in our room for a little under an hour and gave as much info as we could, he joined us on our outting and we continued our conversations. The Van that had come to pick us up was the same one that picked us up from the airport. Though this time we were prepared. Legs cramped and peak hour traffic at its prime we headed for Houhai.
It was nothing like i had expected. When you think lake, you usually think water, not ice. The lake was frozen over and people happily skated along its sturdy surface. The thought immedietly entered mine and Blaz’s mind; how do you think the wheelchair would handle on it. With safety as an issue and mum by our side we stuck to the comfort of the path. We all casually strolled and admired the surroundings untill we took refuge in the warmth of a restuarant. Hot choclate to warm the inside, wine to chill the mind, it was time to head back. 1 by 1 we filled the van; back onto the busy roads, through the city streets, down the drive of the hospital, through the corridors and we were back in our room.
Kamee, Rita and Kotan organised a beautiful cake and we all sang birthday cheers.With the jingles of the chinese happy birthday still ringing in our ears, the day had come to an end. It wasn’t the 21st we had pictured, but it was definately not one we would change. Happy Birthday Blaz.
January 21st, 2007
It was official, 4 degrees; the sun was shinning the weather was sweet, made us want to move our walking feet. Lilly the OT offered to accompany us on a walk to a near by market. We rugged Blaz up in the usual layer upon layer style (developed by mum) and set out in the 4degrees. It was a scorcher, a beautiful change from the – temperatures we have grown a custom to. We set out by foot with the sun in our faces and luckily no wind at our back. The streets, paths and parks were crowded. People walked their dogs, some gathered in groups to play card and others stood alone flying kites. We just admired and walked on by.
Our walk was quiet different, because the direction we were heading had no paths. The street was our path and the cars were just objects in our way, we were on a mission. We used the bike lane to navigate the bust streets. Cars would pass metres away and bikes so close we could have sent them flying with one kick. I offered Blaz an incentive for the amount of bikes he knocked over with his kick, but i think he was more intent on playing chicken with the cars. We battled our way through an intersection and finally made it back onto a path, there were no more cars to play chicken with. We walked on through a park and then down into a tunnel that passed under a main road and then, yep, back onto the road. We continued our mission to the markets.
This market was fairly different to the markets we were used to. I mean dont get me wrong, the markets we go to are big, but this was the Miranda fair of all markets. The building towered over us and stretched for what looked like a kilometre. These markets are where all the locals come to shop. We ventured inside and i swear the building grew on us, it was like Santa’s sack. Store after store, level after level we wondered like children in a candy store. There was too much to cover in one afternoon we announced a week was needed to see it all, we would be back.
January 17th, 2007
I thought id just write a quick update on Adrian and his progress since having 2 of the 4 injections.
Since we’ve been here i have noticed a big decrease in his muscle tone and spasm, his arms are alot more relaxed and they are no longer paddlocked to his chest. Now that his arms are far more relaxed it has given us the opportunity to work with them in Physio, we have been concentrating on him lifting his arms above his face (when laying flat on his back) and he is getting stronger at this. For the first time he did this exercise with his right arm aswell, where as he couldnt before…. During the physio sessions we have also been working on his legs, standing, neck movement, trunk control, eye movement and contact, and sitting. He still seems to have a little bit of spasm in his legs but is standing very well… We are trying to get him to hold his head alot more by himself to strengthen all his muscles, his doing this alot better while standing…
During his OT Sessions (Lilly) works with his mouth and Jaw. She props and pulls his cheecks, tongue and jaw left right and centre to re possition and align it all. Adrian doesnt seem to like it all that much, i think he finds it annoying, but its all for the good. We established that Adrian keeps his mouth open alot because he has an overbight. This was basically caused from lying down for lengthy periods (John Hunter Hospital) while his muscles were weak. The work Lilly has been doing with him has enabled him to close his mouth on a more frequent basis. . . We are working towards Adrian blowing out of his mouth and saying certain sounds on command…
Acupuncture is pretty much acupuncture nothing really i can write about it other than he gets a bunch of needles here and there. . The acupuncturist (Rose) rotates her sessions, some will be acupuncture, others she uses the suction cups, massage and Moxa… Moxa is a stick of herbs which is burnt over certain pressure points to promote/stimulate Blood Circulation. It smells exactly like Marijuana, or so im told.
January 16th, 2007
Today was Adrian’s second Stem Cell Injection. As usual we all woke early and prepared for the day. I started by opening the blinds hoping to see a blanket of white snow, not today. . . Adrian was in high spirits this morning and didnt seem to nervous about his injection, even with me by his side trying to convince him that the needle is 30cm long and as thick as a finger.
We sat around for most of the morning waiting for the nurses in green jump suites and masks to come get Blaz. Like the first injection he was in and out within 15-20mins. The whole injection is a simple procedure; he basically gets a local anesthetic in his lower back, just above the tail bone to numb the pain. Then in the same spot gets an injection with Stem Cell. They call it a lumber puncture.
Straight after this they say its best to lay on your back for 6 hours. Itmust of felt like 6weeks for Blaz, not being able to move, but as usual he did it and with little complaint. During this time he got his IV drips, the ones that help the Stem Cell and we just chilled out. Nothing to fancy at all. He got a mild fever but it was nothing worth raising an alarm over.
Mum and Adrian are both asleep a stone throw away. I’m kind of in another room, well the same room but a different section, using the light from the hall way of the hospital to write. There no curtain to cover the door, so my hands and awkward sleeping positions come in handy. Which im off to do now, its going to be fun, someones snoring.
January 10th, 2007
All this week has been a good opportunity to take turns chilling out. We still have our usual daily routine but with a little more extra time. Mum and Tut have gone to the markets a couple of times to have a shop and a break, by nightfall they kick me out and send me back to the hotel. So alone i trot by myself back to the room. Sitting, Chilling, Thinking, basically fancy words for doing nothing, I decided to walk the city streets and check out the scenery. Put it this way, my walk ended in a hangover some 7hrs later and the scenery from what i can remember was the inside of many-a-pub. I’d met a guy travelling from the U.K (Toby) and it was his wise plan to tackle every pub head on and give them more income in a night than they see in a year.
The next morning, eye’s glazed and hair a mess, I hurled for the nearest taxi back to the hospital. I had some missing funds to explain to my parents. The usual taxi trip back to the hospital was extremely different. Beijing had been snowed on. How a coat of white powder could change familiar objects and buildings so easily. The streets, buildings and parks i’d passed before were once again unfamiliar. A layer of beauty, it seemed fell on the city. Beijing had applied its make-up.
January 7th, 2007
Christmas was a little like any other day, only difference was the few christmas cheers thrown around. It was an ordinary day with the usual physio and rehab routine, our biggest suprise came on the morning of the 26th. Dad decided to fly in for christmas and suprise us all, there was a knock at the door and a remarkebly over-sized shadow for chinese nurse, it was him. It was so good to see a familiar face. We all spent the day together and it felt a little more like Christmas.
Blaz also had his first stem cell injection today. It all seemed to go well, he was in and out of the theatre within 20mins. He was back to the room before we finished our stroll, the hospital staff came chasing us down the street, they caught us in our escape. When we got back to the room Adrian was in bed, he looked pretty relaxed and in no pain. Later on in the night he started to get a slight fever, a common symptom they told us to look out for after the injection. Blaz spent most of the day, Well, All of the day laying flat in bed. They said this would give the stem cell the best possible route to the brain and maximise his blood circulation. Ive been telling Blaz that the harder he works the harder the stem cell works. Its basically like; the stem cell is his little worker, but he needs to order them around. It takes a few months and hard work before we see any major improvements.
January 7th, 2007
