i’m pleased about that because although this is the easiest hospital i’ve been in during the past 4 years, it’s still a hospital and i’m looking forward to going home(our apartment in beijing in wangjing). 
ok, time for bed! wan an (=good night)! 
2 comments June 20th, 2007
i really enjoy working with lily, my speech therapist (SLT), because she’s very enthusiastic and great. plus she just came back from her additional speech therapy education, so she’s on the ball!! she uses her cell phone to look up english words when she gets stuck and can’t think of the english word. i also like that she teaches me chinese words in our sessions because she learned speech therapy in chinese and i don’t mind! i actually like having a chinese lesson in our sessions. she brought a japanese pop song this morning for part of our session. it’s good for me to start singing because it helps with my breath control also. so i’m very happy to be learning a song. i’m not very good at it though.
chinese learn songs through do re mi fa so la ti do, so they can just write 33 666 43231 and they can make sounds from the numbers. i had to write it down so i would remember what 4 is (it’s fa); 1 is do, 2 is re, 3 is mi, 4 is fa, 5 is so, etc. you get what i mean, right? so the japanese pop song is called oriental cherry in english. lily has a great voice also, so it’s fun to sing with her. :-)let me show you songs that lily, my SLT, is teaching me. the singing is good for my voice and moving my tongue and such in my mouth because my tongue is still crooked. it helps me work on getting my voice exercised so that it does get higher, like it used to be before i got injured and sick in 2003.
let me show you songs that lily, my SLT, is teaching me. the singing is good for my voice and moving my tongue and such in my mouth because my tongue is still crooked. it helps me work on getting my voice exercised so that it does get higher, like it used to be before i got injured and sick in 2003.
http://www.youtube.com/watch?v=sYzmymvl-os
http://www.youtube.com/watch?v=VHygJmkFfzE
http://www.youtube.com/watch?v=eVhxyPHElRE
i am very very disappointed that tiantan puhua hospital does NOT have the vocastim collar which is extremely beneficial for speech therapy. i talked with patients from nanshan hospital which is south of here, near hong kong, i believe? and they have the vocastim collar there! i was actually looking forward to using it since patients from the nanshan hospital told me how they used it every day for half an hour and it helped a lot! some patients even bought their OWN vocastim collars so they can use it on their own! the collar basically is electrical stimulation to help muscles work properly, and christine gray who’s the one who told me about it said vocastim helps muscle function and “I can only imagine that helped my larynx & throat muscles work better.” this is christine with the vocastim on.
i wish this hospital had one. i asked lily about it and she said she requested this hospital buy one last year but nothing was done. hopefully since i brought it up to kotan today, i do hope they will get one so i can use it before i leave here!!! 
let’s hope that!!! i know there are lots of patients who would benefit from using this vocastim collar!!! ME INCLUDED, OF COURSE!!!
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the nurses here in the south ward come to visit every patient in the mornings around 8-8:30 and i got a picture of them one morning. you can see here.
that’s sarah on the left, irene, sunny in the front and ally on the right. i’m glad they got their english name tags about a week ago so it makes it easy to see who it is. before, they just had numbers on their name tags so i couldn’t remember their names! i kept asking their names at first and then i gave up! 
luckily they all have their english names written on their name tags! here’s another picture of the nurses here in the south ward.
on friday mornings, all the senior doctors and junior doctors come to visit their patients. this is the time patients can ask the senior doctors questions. well, the junior doctors come visit us every morning also and if you have any questions for the senior doctors, they can be asked then. xi is my main junior doctor. also the terms of senior and junior doctors….i made those up to explain their status. haha :-p i think the senior doctors are also called the directors of your case. it’s easier for me to just say senior and junior doctors, you know? here’s a picture i took last friday when they all came to visit me.
that’s wendy (the patients’ on-hand international department member who goes around to see the patients every day also) on the far left, then dr. wu, dr. wang, amy, xi, jackey in the brown dress and lily, my speech therapist, on the far right. i have to show wendy again because she had a pretty shirt on today….
remember i told you that i’m the worst patient for the nurses to get veins for my IVs and blood? well, i am silly and videoed sarah taking my blood. the day after my stem cell injection last wednesday, they take a blood sample the next day, so this was thursday morning. the nurses usually come around 6-6:30 in the morning to check your blood pressure and inject something into your IV needle so that your blood doesn’t clot and cause trouble for the IVs later. the nurse early in the morning didn’t get enough blood for the sample, so sarah had to come during my speech therapy session and get more blood. if you are squeamish about blood and blood-taking, you SHOULD NOT watch this… http://www.youtube.com/watch?v=h5LksIEcD1g that shows sarah getting my blood.
this is my back after i took the bandaid
off on friday night when i was allowed to shower. 
my leg with the
IV needle
and my IVs.
they had to stick my IV needle in my wrist yesterday but that went bad already after a day! sigh. 
this is sarah getting me again. 
hubby must’ve taken lots of pictures when sarah was on duty…i got another picture of irene.
she and shirley are the great ones for finding veins for hard patients like me.
last thursday, isabelle made coffee time
for the patients and their families in the computer room which is in the rehab center
. here are a couple of pictures for you…
and
also last tuesday, they started offering yoga in the PT room
(don’t you love that spelling??? YOGO!!) but unfortunately i couldn’t go last tuesday because i had just had dinner of a big mac meal set 
with koo and susan and basil and thursday was the first coffee time, so today was the first time i was able to join the class. i used to do yoga in tokyo and london, so i know my yoga. this was good because it really challenged my balance which is one of my problems–ataxia. it was interesting and i made a suggestion that the instructor (carrie, i think her name is) also speak english. lily was in the class tonight and she was doing brief english translations for me and agnes, a hungarian patient here. carrie said that on thursday she will speak both chinese and english. i do hope so!!
ok that’s enough for this blog. wan an! ;-)(=good night)
3 comments June 12th, 2007
hiya, i’m very pleased that hubby william returned yesterday safely from seoul with lots of goodies for me from my mom -and dad, so that’s great! :-):-D
but i’ve had headache pain EVERY DAY since wednesday, the day of my injection. soo painful! william took my picture this morning while i was getting my IVs 
and i was trying to smile.
they’ve been giving me ibuprofen for pain relief and since yesterday night, they started giving me fenbid which is extended relief ibuprofen, william said. so i basically slept a couple of hours this afternoon to make up for poor sleep i’ve had since wednesday. that was good. i do hope the pain stops coming back.
the doctors said that i lost CSF(=cerebral spinal fluid) when they did the lumbar puncture for my stem cell injection which causes brain pressure to change. i also had really low blood pressure today after they started my IVs, so they will take my blood tomorrow morning to check. sigh. so yes, although the lumbar puncture for my stem cell injection on wednesday was absolutely excellent, the days following have been quite poor….meaning terrible head pain and low blood pressure.
1 comment June 10th, 2007
it’s been 2 days since i had my 3rd stem cell injection and man, this is the worst pain i’ve had since i’ve been here! my head has been in pain all day so i haven’t been functioning well today. i could not have my speech therapy with lily this morning because i was just in pain. then i was in bed for most of the morning, trying to read. then i went to my TCM(=TRADITIONAL CHINESE MEDICINE) session with dr. guan. it was nice since he gave me a massage on my head and shoulders. i skipped PT(=physical therapy) with alice since my head still hurt and i’ve been in my room.
i’ve called the doctor since i’m still in pain. i’ve had to take lots of ibuprofen today because the headache has not disappeared. i feel soooo crappy!
so although the day of my injection was great, this is the worst pain i’ve experienced my whole time i’ve been here!
please pray for me, that this pain leaves me soon!
1 comment June 8th, 2007
some of you have asked me questions in your comments about if i can see any difference now that i’ve had 3 stem cell injections. i mentioned this in one of my first blogs, but stem cells need 3 to 6 months to develop into their new roles, so NO, i cannot say that i see any difference in my body since i’ve had 3 injections. however, many patients see great improvements from just their IVs they receive in the hospital. for example, celine
with her ayi(=helper) in that picture, just receives IVs and hasn’t received any stem cell injections yet. they took a bone marrow sample and and they grow that for one month and then inject them into patients. celine has improved greatly from just her IVs; for example, she is paralyzed from the neck down but since she’s been here at the hospital, she has feeling in her tummy area when people touch there. she can also lift her right arm and that was an amazing improvement because she couldn’t move it before! i’ve become close with celine and her mother isabelle so i am very pleased and happy for them!!! yea!!!
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here’s dr. xi,
one of my junior doctors, who comes to see me every morning.
my IV needle was in my right hand yesterday morning, but it was hurting so i knew it would have to be taken out soon.
i got all my snack foods out before they took me to the OR yesterday.
apple cinnamon poptart, nutrigrain bar and popcorn
which mom brought me from seoul because chinese popcorn is sweet which is sick. so i got all my snacks ready because i can’t move after i get my stem cell injection.
they finally came to pick me up around 10:45am yesterday. i wanted ajumma(our cook/maid in our apartment here) to take a picture of the nurse with me on the way to the OR since william wasn’t here to video the event. so here we are on my way for my 3rd stem cell injection!
again it was dr. han who did the whole procedure from the anasthetic injection to getting the stem cell solution injected into my cerebral spinal fluid (CSF)…..i think that’s what it’s called. in any case, i love dr. han because his english is excellent and he’s great and he listens to me. this time, i’d have to say, was the best one out of the 3. why, you ask? because i felt absolutely NO PAIN!!! i got into the OR around 10:47 and he was done at 10:57.
he first injects the anasthesia which hurts immensely! of course, i’m sitting there lying on my left side so my back is facing dr. han. this time, the nice OR nurse who came to get me let me hold her hand! that’s the nurse in the picture above!!! when he was injecting the anasthetic, i was squeezing her hands very tightly!!! but then afterwards, dr. han was pushing on my back asking if it hurt. it didn’t hurt; i could just feel him pushing on my back.
he then showed me the stem cell container which he was injecting into another container with other fluid or something. he injected that into my spine also and i was expecting some pain or numbness or tingly in my legs because the first two times made my legs feel pain and tingle. but NOTHING THIS TIME!! very very pleased!
as i was waiting for some pain and/or numbness and tingly, dr. han announces he’s finished! i was like, huh? what? you’re finished? i was lying there waiting for the pain….but nope! nada!! so pleased i was!!!
i was a bit in shock actually because that was the best experience for me!!! it was nice that the nurse let me grab her hands during the injections, too! so that was another blessing!!!
they wheeled me back to my room where ajumma was waiting and i took a picture of irene (i think it’s irene)
who started my IVs on me then. my IV needle was originally in my hand but that went bad so they had to stick me again.
this time in my right leg inner ankle area.
it was nice that ajumma stayed with me during the 6 hours i had to lie flat on my back. luckily i could turn my head and body side to side so i could chat with william over skype (www.skype.com) and he could see me on my bed since i have a webcam installed in my laptop here! hehe 
ajumma was nice and fed me some dduk bokki (korean spicy rice cakes)
which mom brought me from seoul when they were here over memorial day weekend. i had some of my popcorn too and i finished that 1 apple cinnamon poptart, too.
celine came to see me just as my 6 hours was finishing!!!
we had a nice chat. she’s funny…she’s very happy that the standing table machine is broken so she hasn’t had to stand in over a week. i remember i had to use the standing table machine in tokyo and i would pass out because i had such low blood pressure and couldn’t handle the pressure of standing up! that was 4 years ago!!! amazing how much i’ve improved since then, don’t you think?
celine had to go back to her room for something so then ajumma and i had dinner. i requested she bring me some korean food and she brought me bulgogi which is basically marinated beef. i did a slideshow of the food so you can see all the food i had!
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Add comment June 7th, 2007 my 3rd stem cell injection is tomorrow!i originally thought that it would be on thursday but then esther, one of the nurses, told me this morning that i have my next injection tomorrow! i was shocked and i said, no, i think it’s on thursday. so she called xi, one of my junior doctors, who came by my room later and told me that it’s true, i have my 3rd injection tomorrow at 10am!! shocked! i’m i took pictures of alice here’s the PT room from the other side of the room. wan an! (=good night) 1 comment June 5th, 2007 lily, my SLT, and alice, my PThi there, some of you have mentioned that it takes forever for this page to load! i wanted you to know it’s the same for me. it takes forever for this site to open so it’s not very appealing for me to open it either! let me show you my speech therapist, lily. i really enjoy working with lily because she’s very enthusiastic and her english isn’t bad. she uses her cell phone to look up words. i also like that she teaches me chinese words in our sessions because she learned speech therapy in chinese and i don’t mind! i actually like having a chinese lesson in our sessions. she brought a japanese pop song this morning for part of our session. it’s good for me to start singing because it helps with my breath control also. so i’m very happy to be learning a song. i’m not very good at it though. chinese learn songs through do re mi fa so la ti do, so they can just write 33 666 43231 and they can make sounds from the numbers. i had to write it down so i would remember what 4 is (it’s fa); 1 is do, 2 is re, 3 is mi, etc. you get what i mean, right? so the japanese pop song is called oriental cherry in english. lily has a great voice also, so it’s fun to sing with her. i got dr. xi to take a picture of my back when the bandaid came off last weekend. no mark on my back of 2nd injection can you see? i’ll have to check after i post this blog. ***** no that doesn’t show, so here… also i wanted to take a picture of alice, this is the doorway into the PT area. my brain stem injury caused me balance problems which is what alice works on with me. i first get stretched out and warmed up; alice moves my legs around to warm them up. then she has me do some balancing exercises to work me and then we go to the PT room which you can see above where tony is working on a patient. i then get on the treadmill for 10 minutes. i choose to walk or run by myself…whatever i feel like. alice lets me do what i want. some days i feel like adding some running so i will. it’s cool they have a balance board i am different from the other patients here because william and i live here in beijing part of the year, so we have an apartment here in wangjing, the korean area of beijing which is in northeast beijing. since isabelle, celine’s mother, invited some people from the hospital to go to a music show in wangjing last night, i went home to sleep instead of returning to the hospital. i just have to sign a leave permission form from the nurses so they are not responsible for any injury when i’m outside the hospital. i invited zsuzi to join me and she happily accepted since we have 2 bedrooms in our apartment. i took some pictures of the group that went to the show entitled shadow so you can see here.
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and 
tony
and put them on the previous post, but i’ll show you again. here’s one entrance to the PT room.
this is the place where they have this awesome device to check your equilibrium and balance, etc.
see that in between the silver bars? it’s there you can test your balance and stuff. i’ve done it once with tony and then i asked to do it again with alice. it’s great! it’s just unfortunate that the printer doesn’t work so i can’t get a copy of my test results and compare. sigh. oh well….
my favorite balance board
here’s the treadmill i walk/run on for 10minutes every day.
ok, i have to go to bed so i’m not too tired for my injection!!
she comes every morning to my room at 9:30am. she told me this morning that she’s on duty tomorrow also so i’ll have a speech therapy session on saturday also! yea! 
no mark, so that’s good! here are my IVs after my 2nd stem cell injection.
and i am the worst for the nurses since my veins are so bad; they keep having to stick me with needles because my veins go bad and they hurt because the IV liquid ends up going into my skin instead of my veins. i’m jealous because basil has only had his IVs stuck in 2 places!!! i think i’ve been stuck about 10-15 times already!!!
it’s in my
left arm now when yesterday it was in my left hand top. they have to keep changing places because my veins go bad. 
that’s susan at the front desk in the center.
my physiotherapist; that’s an occupational therapy room. i used to see tony but i’m more comfortable with a female since ….well, it’s just more comfortable but i’ve learned that tony
that gadget tests your balance and equilibrium. i did it 4 times while i was in the hospital, and it’s interesting that it shows i favor my left leg and foot. i put more weight on my left side. that’s also probably why i was a left wing in soccer in high school. when alice and i play soccer on the balance board, i score more with my left foot too! 
from the other end of the room.
— get me sweating so i can stay in shape.
and i am thrown a ball and try to score. 
alice is by the door which acts as the goal 
and i’m good! hahaha