JC went for his 2nd injection last night and we were not nervous this time but very excited as we have seen what amazing things happened for a couple of days after the 1st. He is suppesed to lie down for at least 6 hours flat, no pillow and no movements. Well he had to go to pee and wouldn’t go in a bottle like I suggested and went after only 2 hours. I hope that he doesn’t get a crazy headache from this. He went to physio and acupuncture this morning even though his back is a little sore in the injection area. We are the only ones down there because most of the doctors are on a holiday for a couple of days, I think that it is like our labor day. Let me tell you these people in China deserve a holiday, they bring new meaning to the words hard work.
The people all take pride in their work and never just stand around. I have never seen so much physical labor, people are digging ditches, lifting huge pieces of concrete into trucks, pulling cart loads, piled high down the streets and carrying heavy baskets on each shoulder filled with fruits or whatever. It is no wonder why everyone is so thin.
We went to get a foot massage and even these guys were tiring me out just watching them. This massage was an hour but only $7.00. First you sit on these very comfy chairs and put your feet in these buckets each has a new bag in it so that you know you aren’t going to catch some sort of foot fungus, which is VERY important for me to know this. Our hot water feels very gritty on the bottom and you can’t see your feet because it is quite murky. Then they start massaging your back, I made sure that the hospital staff wrote down the word for very gentil on a paper and I show them before we start. If this is gentil I would hate to see rough. When they start working on our feet, the guys are looking at my feet and are talking about them, and laughing. So I decide if they think my feet are freaky now wait until I show them my babytoe trick. For those of you who know me you know I can move my baby toe out quite far it’s funny. So I tell JC and Cindy (from US) to watch how they react. They are all looking at me like I am crazy and we all can’t stop laughing.
We are eating better now. We went to KFC and ordered chicken burgers. On the sign it looks like back home but once I take a bite it is defineately not like home. My body vilently shakes and I have to spit it out. It is all brown inside, it looks awful. I decide to try again and my body does the same thing and I spit is out. Enough of that I eat the fries. JC ate his no problem. I am not a picky eater at home I will eat anything. We had eggs this morning and when we cracked them open one is full of red stuff, I say blood, he says I am crazy and he eats it. I try but can’t get my head around the blood thing so I leave mine. I have never left an empty plate in my life, here I haven’t finished a plate. Oh I forgot to tell you that after I ate the chicken burger I had all these long string things in my teeth. Maybe they have dental floss inside there meal insead of after. Well I have to go. JC is walking good today and he wants to take me out somewhere to eat, HELP!!!!!!!!!!
April 30th, 2007
Since we arrived here we have been on the look out for some fantastic toys. We fiqured that since everything in Canada says made in China we would hit the jackpot with toys. We were hoping to bring the kids back some cool toys and eliviate our guilt for leaving them so long. However there are no toys here we have gone everywhere. I asked the girls who work for the stem cell company who speak some english what the kids play with here or what they played with when they were little. Toys is not a word they understand. When my kids don’t want to do their homework I would always say” in China the kids study from the time they wake up until they go to bed.” I did not know this to be a fact but now I really think that they do study or read for fun because they don’t have anything to do and they don not know any different. We have watched some kids activities around town like renting roller blades and skating around in this little roped off area. There are also these huge plastic bubble things, like we put hamsters in to scoot around this house, well the kids get in and float around in a little pond. They have pony rides but they are not real ponies they are like our big stuffed horses that you win at the exibition with wheels on them that kids go up and down on and race them, quite funny to watch.
When JC is not with me I never take the elevator not because I dont’ feel like waiting for it but because seeing all the people here in the hospital who can’t use their legs makes me have a very grateful that I can take the stairs. I enjoy everystep down and up the stairs as we all should. We take for granted that we can move but in a moment it can all be taken away. So hopefully those of you who can will take the stairs today and really appreciate this gift.
They try to save energy here for instance the hotwater in the shower is only on for so long during the day and those stairs I was talking about are in darkness until you walk by a motion sensor and it lights up in front of you so as I walk the 10 flights of stairs it is total darkness behind me so it is like a horror movie when I hear voices but can’t see where they are coming from, so if I fall down the stairs because the sensor didn’t come on or if I am murdered in the stairwell at least you will all know that I was happy to be there.
JC gets acupuncture and an IV with chinese medicine in it everyday and he absolutely dreads it. IV is usually uncomfortable when it is being put in but the 2nd IV he had the nurse tried 3 times and even scraped a bone it was torture, the next day different nurse no problem, yesterday the bone scraper came in to do it we both looked at each other and rolled our eyes, I stayed on the computer minding my own business hoping that today she would know how to do it. Well I heard her say sorry and I stood up and asked JC if it was in, he said that it was the 3rd time she tried I yelled to her to stop and told her no more, then I ran to get some one who spoke english and to look for the other nurse who took one time to get it in. I found them and moved the other nurse who is very friendly but to tortorous out of here. The good nurse put in right in no problem.
Ladies I have found the trick to make your husband fall back in love with you TELL HIS IV NURSE TO GET OUT. I swear that after that IV was in I literally saw hearts in JC ‘s eyes and like you see in the cartoons little lovebirds circling around his head, he was so thankful that I stopped her. I went to her later and said sorry if I made you feel bad but you hurt him to much and the other nurse was not so painful, she said sorry and that she understood. Wonder who will give him the next one, ha ha. In Canada we would just have to suffer through with whatever nurse we got but here, we are lucky.I tried to get those hearts and birds back with acupuncture by telling them that we only want the doctor to do it instead of the ” the assistants” because they hurt, we got the doctor to do it now and it is not as painful. No birds but seeing him not suffer is reward enough.
I am writing this on Sunday morning because this web page was not working last night. JC was walking very very unsteady lastnight. This morning not to bad and we get another stemcell injection today, we can’t wait. I am not allowed in the stemcell room and even if I was I probably wouldn’t be allowed NOW. I am very home sick but I try not to think about how many days are left but focus on how many days we have to get him better, it’s a little easier that way.
Thanks for all the prayers…………………
April 29th, 2007
Everyone has told us that there will be good days and bad days but where we started off so great after the 1st injection we thought that it was going to be all good. Lastnight JC had a major headache which he never gets but it is a side effect of the stem cell injection. He went to bed very early 7:30. We woke up early and spoke with the kids via web-cam, such a wonderful start to our day. JC’s walking is off and we hope that it is just because it is early. Unfortunately his balance is very unsteady the whole day and we are both disappointed. We do the regular daily routine and the headache is still hanging on but JC still gives 110% but it is frustrating because his “dizziness” has returned.
A good part of today is that we found a few things we could eat. For lunch we went to a restaurant and pointed to a picture with spagetti and one with rice and veggie/beef. The spagetti was tasty but the other tasted like Mr. Clean. We also went out to eat with our friends for supper at a place where the menu had some english and also a waitress who spoke english it was great, JC had steak.We are very lucky to have such wonderful friends here, we know we will be friends for life.
Something else good was that JC did not have acupuncture today, we think that they forgot and he wasn’t going to suggest it.
I also think that I have found the secret to the elevator situation. I put Bengay heat cream on my leg today and when I got in the elevator people were gagging and holding their noses, people were getting off the elevator because they couldn’t stand the smell and they weren’t hiding the fact that it was because of me. You would think that this would be embarassing but I couldn’t stop smiling and thinking to myself no more crowded elevators for me.
I am quite shocked at how many bums we see on the streets here, and I don’t mean homeless, I mean bums literally. Everywhere you go baby’s bums are hanging out, the small children and baby’s pants all have a slit down the bum and no diapers they just go anywhere and I quess the parents just clean the spot, I haven’ quite figured this out yet.
Bathrooms are a totally different story. It is funny how with all the people we talked to about going to China and all the research we did one little fact slipped by.
On our first full day here JC and I went to get “massages” to (tramatic to mention now). I had to pee really bad and of course I hadn’t bothered to learn the word for bathroom at this point, so I am making hand gestures and doing actions, try it is harder than you think, finally after doing this for a few minutes and for a few people I was finally directed to a room with a couple of stalls. I go in the first one and there is a hole in the floor, so I move to the next stall figuring that maybe they were reparing where that toilet was supposed to go, next stall same thing but this time I see a roll of toilet paper. At this point I am ready to explode and figure this is going to be impossible well let me just say it’s possible. This is the normal way of using the bathroom, sqatting over a hole in the ground, we fiqure that is why everyone around here has no thighs or bum because they are doing squats all day long. So when I get home my toilet is gone.
We have to go in every bathroom everywhere, we go just to get a look and to let those who haven’t experienced this new exercise routine try it out. YOU KNOW WHO YOU ARE AND SO DO YOUR SHOES.
Well I am writing this late and JC is already asleep, so sweet dreams , I hope tomorrow is better for JC.
April 27th, 2007
We wake up at about 6:00( we go to bed at 8 every night because we are so exhausted)
We go on the web cam and talk to kids and family( the only way we make it through the day)
Get showered, dressed and search for something to eat ( today we bought eggs which are not refrigerated but sit out in the heat, but we are so hungry we take our chances)
The patients in these hospitals have family members bring their food, the hospital does not provide it.
At 9:30 we make our way to the dreaded elevators and I am serious when I say dreaded. It is quite the production. 1st we wait for about 7 min. till it reaches our floor and then we squeeze in amoungst the crowd. There is no such thing as personnal space here, you are literally on top of the next persons toes. At each floor it usually stops, we are on the 14th we need to get to the 4th. As one person gets off, 3 get on until the buzzer rings, meaning if one more pound gets on, the cable is snapping and we are plumeting to our dealth (no exageration). I tell JC that I must never get on last because if the buzzer rings when I step on I WILL NOT BE HAPPY….. We make it down just in time 9:59 for physio the doctor takes us in right away.
1st JC must do arm exercises, balance exercises ( great and simple but never mentioned to him in Canada), walking up and down stairs which is a challenge usually but with the stem cell injection he can do it without holding on. Lastly he goes on the treadmill like I previously mentioned he does not hold on now.
Now it is off to acupuncture or as we call it the “torture chamber”. He lies down on this hard as a rock bed and waits for these long 1.5 inch needles to pierce through his skin, hitting nerves and then have elecrtic shocks sent through them, sounds very relaxing to me. This lasts for about 20 minutes. We absolutely believe that this helps as we have seen physical results happen for our friends here.
This all takes about 1.5 hours.
Time for lunch, this just seems like a cruel joke now.
Then he gets an IV with the ” chinese medicine ” in it. It is supposed to help with stimulating the stem cells.
Back at it again at 3:30. This time JC does all the exercises again and then over to occupational therapy.
This is where JC has a swallowing collar put on his throat for 30 min. It looks like a neck brace with electrodes sending shocks to his throat muscles. It makes bubbles in his throat. ( hopefully we will be able to show pictures on this blog sometime ).
Now it is 5:00 and he is free to do what ever he wants. What we want to do is have a huge turkey dinner with mashed potatoes and gravy but we go to the grocery store instead.
It is very shocking to me that with so many rows of food the only thing that looks farmiliar is bread and noodles. We did see something really cute lots of huge pretty turtles in a tank, only thing was that this was a grocery store not a pet shop. I tell JC lets make spagetti tonight very excited but can not find any sauce, so toast it is for supper along with our staple food that we have in our room: chips, choclate and pop. Help!!! our bodies can not take any more junk!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
We put a movie in and fall asleep it is 8:00. I dream about the kids, family and home every night.
Some strange things that we have found about life in china is that we haven’t seen a bird, saw 1 cat that was being swished into a plastic bag, hopefully a child was getting a nice new pet, 3 dogs which do not look like our dogs(hard to describe), absolutely no stars and a couple of times a day the outside gets bright but I can not find the sun. People spit everywhere, I mean we have to dodge it all day. Even inside it is everywhere, and for those of you who know my germ phobia, it is just about sending me over the edge. I hope that I am not affending anyone because I do not mean any disrespect, I am just saying that our cultures are very different but each is special. Talk to you tomorrow.
April 26th, 2007
Day two after injection is a painful one for JC. His back, glutious maximus (he did not want me to write bum cheeks), and leg muscles are really hurting. I asked the doctor for pain medication and they said that the physio today would be just for pain. We were hoping for some sort of great chinese remedy from ancient times, they gave him a heating pad…… It did not help, he did acupuncture which is pretty painful and sooooo deep and leg rap electrodes nothing helped so he waited for a couple of hours and I couldn’t stand seeing him in so much pain so I pulled out MY great remedy, extra strength Advil ( I asked the doctor first though because we wouldn’t want to kill the stem cells). He feels better.
His walking is soooooooooo much better, he said that if he wasn’t in so much pain he would be walking normal, quite a thing for him to say. He says he feels like he did a year ago, amazing when you think that he has had only one injection, five to go.
I woke up today with some blister like thing on the top of my foot, I asked the doctor she doesn’t know what it is, heeby jeebies I quess.
We can not find any food that satisfies us. I asked where we could get some chicken chow mein or chicken soo gi they looked at us like we had a couple heads and said chicken kentucky down road (KFC). We are eating pizza and chocolate bars so just junk. We need some fruits and veggies but don’t want to get sick. We are meeting up with some canadian teachers who run a private school here in a couple of days and they will show us where to eat, thank heavens. For those of you who know me they DO have diet pepsi here and I would be a crazy person without it.
We are so fortunate to have a web cam where we can talk to the kids and our family everyday, this helps more than you can imagine. We miss everyone so much but seeing them helps us go on with our day here.
They say that patients who come here with Frederic’s ataxia, ataxia’s and MS see almost instant results and spinal cord injury a little longer but there are definate results. There are also children with autism and people with other diseases which benefit from stem cells.
I am trying to docment JC’s progress with our video camera so that people can watch the improvement for themselves. (SEEING IS BELIEVING)
We have to go for more physio now, I’ll write soon.
April 25th, 2007
Well they wheeled JC down the hallway to get his first injection, we are both very nervous. It is not like in Canada where the doctor’s come and tell you the whole procedure, we had to find out through others who have already had it done. It took about 20 min. and he has to lie flat and still for 6 hours. This is a pretty hard request because I don’t think that JC has ever stayed still for longer than 5 min. He did it and not one complaint. He got up about 20 min. to early to pee, he wouldn’t pee in the bottle like I asked him to. He did not get the dreaded spinal headache everone talks about thank goodness.
During the first couple of hours after the injection he gets stem cell growth factor by IV, then a liquid they say will wash the cells and finally some ” chinese medicine” that is what they really call it, and when asked to translate they say that it does not translate. I have noticed a difference when JC got up to go to the bathroom during the night which usually involves alot of stumbling and feeling around in the dark tonight with very little light he finds his way to the bathroom, without holding a wall, with little help from me. Maybe just a coincidence, that he now has these new amazing cells in his body. We wake up in the morning and go for a walk in the park, JC does not bring his cane and is doing good on his own. Probably another coincidence.
But during physio it is very evident as he preforms the same exercises as yesterday before injection and is very unsteady and I am constantly having to catch him as he tips over or stumbles there is none of that today he needs VERY little steadiing from me. He walks on the treadmill where only yesterday he had to hold on, no if and or buts about it or he would absolutely fall off he USES NO BARS TODAY, the doctor sees the improvement as does everyone who was with us yesterday it is very moving and tears come to my eyes because I know now that this is going to work and that we made the right decision by coming here. We are told not to get to excited as it could just stay at this level of improvement, how can we not be happy there is obvious improvement and we can’t wait for more injections.
April 24th, 2007
We have had a couple of days to get organized and see how things work around here. The stem cell ward is set up very nice. We all have our own rooms with lots of privacy. The Beike staff are VERY helpful. Nurses and doctors do not baby patients like in Canada but they do their job well. Doctor’s are very educated here and it shows in there work ethic. Everything runs on time here down to the second if they say come to physio at 10:00 the doctor gets you at 10:00. The language barior is difficult but we have a card with the essentials on it from the Beike company which we point to and it works. We have met wonderful people from canada, thailand, US, Romania and all over. We stick with the english families who we feel so close to already. We have such a bond because we are all so hopeful that these treatments will give our loved ones such a better quality of life. The physio room has basic equipment but the programs they set up for each patient are so efficient. We are very impressed. The accupunture is different here the needles penitrate deeper than we are used to and have electric current running through them. It is a little bit of pain with alot to gain. JC has to go for an MRI in 5 min. and we can not be late that is a no no so we will write after JC’s first stem cell injection. Talk to you all soon. Cherie and JC. p.s. spell check is not working on this yet ha ha
April 23rd, 2007
We have arrived here.
April 23rd, 2007
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