29 April 2011
I got woken up at 8:15 or so by my parents phone call to get ready but I didn't get dressed to go out until they came over to help me.
I had an appointment at braeside to see the speech therapist (ST). She assessed some of my talking, getting me to read some words and sentences. The main thing I got from it is I need to talk slower. Since it will be more clear if I pronounce every syllable.
I was done at about 11. We went to get some food and then it was home for me. A few hours until my friends came over to take me to the movies.
They helped me get in the car. I don't get motion sick unless I read or do something in the car other than look around or talk and only if I didn't get enough sleep. At the cinemas Henry needed to sort out something with the online purchased tickets while I got to buy popcorn at the candy store. I got to pick our seats as the cinema was pretty empty and they weren't going to enforce assigned seating by our tickets. I could move from the wheelchair to the seat on my own so Henry went to get the others who were hungry and went to the food court.
I got to watch Fast and Furious 5. I felt the movie was decent it eluded to the other films. What seemed to bother me was that if hanh was rich (I.e. He got 11m from the heist) why does he have to work for the DK in fast 3 and eventually die. Also the prison breakout at the start should killed the prisoners as the bus rolled a few times. Compared to the other films in the series this is worth watching. Next was dinner
We went to eat dinner but the place we had in mind was closed. So we went to another place. Ricky was the one that was hungry though we ordered at the same time his food didn't come when ours did. He ordered congee with thousand year old egg. We joked that they were making the egg and that 999 more years to go. When he asked they said it was coming but when he asked again they were sold out. Overall the meal i had was great and I wouldn't mind going again.
Next it was back to my place. When I got back it was getting late so my uncle made me take a shower. While I took a shower they casually played cards and watched the royal wedding. When I was done I suggested we play some poker but they wanted to watch the wedding. I should mention they are males -.-
It was getting late so they went home.
Saturday, April 30, 2011
Thursday, April 28, 2011
A FAQ
FAQ
I didn't think i needed this but I hate typing out the same things. Without anymore distractions, here's some Q and As:
How old were you when you were first diagnosed?
I was 9 years old
How old are you now?
I am now 20 years old. Dob 15.6.1990
What symptoms do you have?
Muscle weakness
Lower limbs being weak
I cannot walk alone more than 2m
Problems with my bladder and bowels - I find it hard to initiate
Speech problems - difficulty pronouncing some words
Mild swallowing issues - I eat slower now to combat this.
Who do you live with?
I am living with my uncle and grandma as it got dangerous for me at home to go upstairs and downstairs.
Describe your family.
I am the eldest child of three ( I have two sisters)
I have a mum and dad
I was born in Australia to my parents who are vietnamese migrants
What is your nationality?
I grew up learning Cantonese and I know a bit of vietnamese not good enough to speak it. I got schooled in australia so I'm best at english.
Wait didn't you say your parents are from Vietnam?
Yes, but they come from Chinese families.
What is the extent of your education?
I finished year 12
I was in my 3rd year studying B Business/B science in IT at the university of technology, Sydney when all this happened. This would've been my final year
What do you do in your spare time?
Watch tv
Blog
YouTube
Play on iPhone 4
Make phone calls
Read
Nap
Use netbook
Music
Facebook
How do you get around?
I use a wheelchair
What do you type on?
My iPhone 4
If there are more specific questions you can comment below or pm me on fb.
I didn't think i needed this but I hate typing out the same things. Without anymore distractions, here's some Q and As:
How old were you when you were first diagnosed?
I was 9 years old
How old are you now?
I am now 20 years old. Dob 15.6.1990
What symptoms do you have?
Muscle weakness
Lower limbs being weak
I cannot walk alone more than 2m
Problems with my bladder and bowels - I find it hard to initiate
Speech problems - difficulty pronouncing some words
Mild swallowing issues - I eat slower now to combat this.
Who do you live with?
I am living with my uncle and grandma as it got dangerous for me at home to go upstairs and downstairs.
Describe your family.
I am the eldest child of three ( I have two sisters)
I have a mum and dad
I was born in Australia to my parents who are vietnamese migrants
What is your nationality?
I grew up learning Cantonese and I know a bit of vietnamese not good enough to speak it. I got schooled in australia so I'm best at english.
Wait didn't you say your parents are from Vietnam?
Yes, but they come from Chinese families.
What is the extent of your education?
I finished year 12
I was in my 3rd year studying B Business/B science in IT at the university of technology, Sydney when all this happened. This would've been my final year
What do you do in your spare time?
Watch tv
Blog
YouTube
Play on iPhone 4
Make phone calls
Read
Nap
Use netbook
Music
How do you get around?
I use a wheelchair
What do you type on?
My iPhone 4
If there are more specific questions you can comment below or pm me on fb.
Tuesday, April 26, 2011
25 April 2011
25 April 2011
I got too tired from the BBQ so I woke up at 11am. I skipped some of my morning routines as I didn't have the time.
I had bacon and eggs with toast for breakfast. It was a cloudy day and it rained glad it didn't rain on the BBQ day.
For dinner I had salad and lamb steak. Looks like there will be plenty of meals like this one.
My cousin came over afterwards and we got to talk abit. I webcammed with my cousin, Emily who showed me her baby sister and I got my cousin who was over to chat/see her. We watched some tv then it was time for them to leave.
I got too tired from the BBQ so I woke up at 11am. I skipped some of my morning routines as I didn't have the time.
I had bacon and eggs with toast for breakfast. It was a cloudy day and it rained glad it didn't rain on the BBQ day.
For dinner I had salad and lamb steak. Looks like there will be plenty of meals like this one.
My cousin came over afterwards and we got to talk abit. I webcammed with my cousin, Emily who showed me her baby sister and I got my cousin who was over to chat/see her. We watched some tv then it was time for them to leave.
BBQ Sunday
The BBQ
A huge thanks to my mum for buying everything for the BBQ.
A huger thanks to uncle hai for bringing the grill, marinating the meats and cooking.
A very huge thanks to my uncle Keanu for letting me host a BBQ, setting up the seating and food, and for cleaning up.
Lastly, thanks all for coming
One of my fears from the BBQ came true, I would have food leftover for the next week. Everyone went for the sausages so there's none left.
I had nothing to be scared of. I found out later that uncle Keanu already went to the neighbors and told them we were having a BBQ and could be loud.
Sorry most people had to leave at 10pm. It was getting late and I needed to sleep. I would've invited more people but it was getting crowded
A huge thanks to my mum for buying everything for the BBQ.
A huger thanks to uncle hai for bringing the grill, marinating the meats and cooking.
A very huge thanks to my uncle Keanu for letting me host a BBQ, setting up the seating and food, and for cleaning up.
Lastly, thanks all for coming
One of my fears from the BBQ came true, I would have food leftover for the next week. Everyone went for the sausages so there's none left.
I had nothing to be scared of. I found out later that uncle Keanu already went to the neighbors and told them we were having a BBQ and could be loud.
Sorry most people had to leave at 10pm. It was getting late and I needed to sleep. I would've invited more people but it was getting crowded
Sunday, April 24, 2011
Brief update
24 April 2011
I write this at 5am. I can't fall asleep again after waking up at 3am. This sucks so much. My uncle and my mum says its because I think too much. My uncle thinks I should meditate to clear my mind. I have been learning it by focusing on my breathing while closing my eyes it sucks that I get sleepy when I do it during the day and can't sleep at night.
Now I'm typing the blog at 11am. I managed to sleep again at like 6am and woke up at like 9am finding spare time now. I think I'll voice record the blog and get my sister to transcribe it this would mean that I can't do entries late at night because apparently I'm loud.
I get to host a BBQ at home today for some relos and friends.
I write this at 5am. I can't fall asleep again after waking up at 3am. This sucks so much. My uncle and my mum says its because I think too much. My uncle thinks I should meditate to clear my mind. I have been learning it by focusing on my breathing while closing my eyes it sucks that I get sleepy when I do it during the day and can't sleep at night.
Now I'm typing the blog at 11am. I managed to sleep again at like 6am and woke up at like 9am finding spare time now. I think I'll voice record the blog and get my sister to transcribe it this would mean that I can't do entries late at night because apparently I'm loud.
I get to host a BBQ at home today for some relos and friends.
Wednesday, April 20, 2011
Small excursion
19 April 2011
Rather than start off with a review of the day I'll share something. I go into hospital on the 10th of May I wasn't too afraid but after the information session I am now scared. When doing something for myself or entering an environment I am fine with it being 'khu ki' or whatever. When asked about food I am fine with anything so I just say 'si dan' which means anything.
So I woke up at 8.30am skipped blogging and the morning exercises. I felt tired and sleepy the entire day because it took me 1-2 hours to sleep and I had broken sleep waking up at 3 and 6.
I went shopping after lunch time. I bought some more snacks. It was different to my usual mentality of: get in, buy what you need, get out. I didnt have an objective to go to shop. Still drowsy I got a coffee chillier it was nice but i vomited about 30mins later because i felt dizzy getting pushed along in the wheelchair.
Rather than start off with a review of the day I'll share something. I go into hospital on the 10th of May I wasn't too afraid but after the information session I am now scared. When doing something for myself or entering an environment I am fine with it being 'khu ki' or whatever. When asked about food I am fine with anything so I just say 'si dan' which means anything.
So I woke up at 8.30am skipped blogging and the morning exercises. I felt tired and sleepy the entire day because it took me 1-2 hours to sleep and I had broken sleep waking up at 3 and 6.
I went shopping after lunch time. I bought some more snacks. It was different to my usual mentality of: get in, buy what you need, get out. I didnt have an objective to go to shop. Still drowsy I got a coffee chillier it was nice but i vomited about 30mins later because i felt dizzy getting pushed along in the wheelchair.
Monday, April 18, 2011
Sad saturday
16 & 17 April 2011
On the Saturday I was meant to go to the dinner event. I had changed my clothes and had organized a way back home for the night.v Then as I was about to leave it started to rain. I changed back and was upset so i stayed in bed. Now I should explain that I can't afford to get sick as I have to be healthy for the bone marrow transplant (bmt) since being sick will mean that they can't go ahead with it. I didn't do much that night I had called and asked my friends to come over after dinner. But they finished at like 9.30pm, it was getting late and I needed to sleep not to mention the neighbors complained about noise and my uncle and this place got a letter from management to keep the noise down. This is so lame as we tried to be quite anyway eg only ever having the tv turned to a audible volume, whispering at night and etc
They should've just confronted the people being loud but no, instead they went to management.
So Saturday was pretty much uneventful as I couldn't go anywhere because of the rain.
Sunday I was meant to go out to cube draft but it was a cloudy day and I was feeling tired so I had to call it off and instead they had to come over later in the day. This is my schedule for an ordinary day
6am wake up
6:10 do my leg exercises
7:30 blog/play on iPhone
8:30 ask uncle to have breakfast made while it's made i brush my teeth
8:40 eat breakfast
9:10 do anything
12:00 ask uncle to have lunch made
12:15 have lunch
13:00 do anything, usually tv
17:00 eat dinner
18:00 do anything, again it's usually tv
22:00 shower with help from my uncle
22:30 brush my teeth
22:40 sleep
Of course there's bathroom time when I need to go. I snack in between meals sometimes too full for lunch.
On the Saturday I was meant to go to the dinner event. I had changed my clothes and had organized a way back home for the night.v Then as I was about to leave it started to rain. I changed back and was upset so i stayed in bed. Now I should explain that I can't afford to get sick as I have to be healthy for the bone marrow transplant (bmt) since being sick will mean that they can't go ahead with it. I didn't do much that night I had called and asked my friends to come over after dinner. But they finished at like 9.30pm, it was getting late and I needed to sleep not to mention the neighbors complained about noise and my uncle and this place got a letter from management to keep the noise down. This is so lame as we tried to be quite anyway eg only ever having the tv turned to a audible volume, whispering at night and etc
They should've just confronted the people being loud but no, instead they went to management.
So Saturday was pretty much uneventful as I couldn't go anywhere because of the rain.
Sunday I was meant to go out to cube draft but it was a cloudy day and I was feeling tired so I had to call it off and instead they had to come over later in the day. This is my schedule for an ordinary day
6am wake up
6:10 do my leg exercises
7:30 blog/play on iPhone
8:30 ask uncle to have breakfast made while it's made i brush my teeth
8:40 eat breakfast
9:10 do anything
12:00 ask uncle to have lunch made
12:15 have lunch
13:00 do anything, usually tv
17:00 eat dinner
18:00 do anything, again it's usually tv
22:00 shower with help from my uncle
22:30 brush my teeth
22:40 sleep
Of course there's bathroom time when I need to go. I snack in between meals sometimes too full for lunch.
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