Saturday, April 30, 2011

Out for most of the day

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. 

Thursday, April 28, 2011


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
Play on iPhone 4
Make phone calls
Use netbook

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. 

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

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. 

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.  

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. 

Friday, April 15, 2011

Info day

14  & 15 April 2011

The 14th was information day at westmead hospital. The folks came over at 9am to get me ready to go. I was tired that morning and had napped on the sofa after breakfast. 

The info session was very informative for me. The presentation was much like a uni lecture. I'm scared of the procedure to put a central line in my chest. 

When the info session was over we went to parramatta Westfields where I went to JB and browsed their DVDs to end up just leaving. Next I wanted to look for a novel but we couldn't find it in Westfields so I had to ask my dad to wheel me outside to another store. They had it, the tezzeret book which I wanted to give to Guisseppe as a going away present. He is going to migrate to France. 

My family and I had some Laos food Then I had to go home to sleep. I was so tired from the day. Which brings us to today. 

This morning I woke up at 7am and then I spent some time doing my leg exercises until breakfast. For breakfast I just had the usual, corn flakes and soy milk with jam. Im slightly lactose intolerant in that I can have 1-2 glasses of milk. while I can eat cheeses.

I spent my morning organising people to visit me today/tonight. I wrapped the present up it is hard work to get it looking good so I just did a rough job. No wonder places offer free wrapping during Christmas it is such a chore. 

At lunch time Guisseppe is coming over for a visit. If I could only go out by myself I would meet him for lunch. 
I type this now as I have some spare time.  Guiseppe played some magic and talked for a bit. 

Tonight after dinner we will be doing a team draft. 

Tuesday, April 12, 2011

New place :)

12 April 2011

Sorry that I couldn't post updates because I didn't want to use my mobile net to do so. This post will include lots of photos instead waiting for the wifi.

I am feeling very happy now that I have a change of environment and it is far safer for me to move around on my own though my uncle Keanu insists that he supervise me in case I do fall. He said I had gotten stronger in my legs so hopefully it's true as I begin my daily exercises.

My friends can come over to visit me which is nice but they are typically free only towards the end of the week.
My friend Wilson gave me some stuff to read. So many things I want to read but I am a slow reader so it will take me some time.

So many things to re blog but I don't have the stamina or the time to type it all up. I have typed up the answers to an interview that Anna had to do for uni. So with her permission I will upload the assignment later on in the week.

I went outside to the front to get some morning sunlight. I enjoyed the warmth and my pale colored skin can darken.  I think I will do this every morning as I feel much better afterwards.

I want to upload photos of my dinner but fb doesn't let me upload them and I hate using my net book as I first need to connect my phone, find the file and then browse for it through fb. I just cbf doing it. So apart from today I don't want to show pics of my dinner unless the fb app works.

As promised here are some photos.
Apart from the front it looks so much better in the morning.
How I get around now
Where I sleep

The lounge room

My uncle Keanu and the kitchen

Random things that happened in the last few days
  • For dinner or more so lunch I had kfc over the weekends
  • Friends visited me and we played poker
  • Friends visited and we played dominion
  • My relatives came over
  • My uncle Eric and his family came from interstate
  • I asked the speech therapist for exercises
  • I got some leg exercises from the physiotherapist

Friday, April 8, 2011

The move

7 April 2011

I woke up at 7.30am and felt good so that's a start. I have noticed i like routines and schedules as they are planned events, I can prepare for. 

I will write my blogs when I wake up in the morning as I have the time. Though I am limited to just typing while there is no wifi to upload pics. 

The new place is so nice I'll have photos in a few days when everything is unpacked. Thanks Lo for helping set up my bed and for taking me around the block. 

Thursday, April 7, 2011

Moving, slowly

6 April 2011

Nothing really eventful. I woke up at 8am despite arriving home late but I was tired so I went back to sleep, it takes me some time to fall asleep yet I tend to be a light sleeper so I get woken up at times. I woke again at 11 ish time to get up. 

I had some bacon and eggs with toast for 'breakfast'. Then i sat down and did some blogging to catch up on the past days. My mum came over to keep watch over me. While my uncle moved some unneeded things to the new place. 

I have not seen the new place yet but am excited about it. It's not far from my current home so not too far from my family. I will take some pictures of it but will be without the net for a few days. 

At night after a shower I played words with friends over the net with my sisters. I lost as I kept 'q' and 'u' tiles in my hand. 

I slept after the game as I got sleepy. 

Wednesday, April 6, 2011

Tuesday gathering

5 April 2011

It was yesterday so I should remember it. The morning was like any other. At around lunch my mum came over to look after me while my uncle had to take granny to sign a new lease. It was for a few hours till it was time for me to leave for a gathering. I ate before we left the house as my uncle had to drive me there.

It was to play some magic for a few hours. People were late to arrive so we (Ronny, Neil and I) played a game of 'dominion'. The social gathering was among magic players that were known to Tony (who I met at the fundraiser auction).
Ronny who I had met a few years back when I started magic helped me get in the house from the car and from the door to the play area.
There I met some other people and to my surprise and delight a friend from uni who turned out to be Tony's workmate. In the end I came near last. Tony ended up winning the cake he bought for the winner of the event. It was time to leave and Tony ended up driving me home. Thank you Rony For helping me. A big thanks to Tony for taking me home. Thanks to Neil for hosting the gathering.

When I got home I was exhausted and went to sleep as I got into bed.

Monday rehab

4 April 2011

It's Monday again. This day I had an appointment at Braeside hospital for rehabilitation. I thought it was like the other times (i.e 9.30) but it was earlier this time at 9:00.

At the appointment the speech specialist was absent as she was sick (I hope she gets well). So i met with the physiotherapist and the occupational Therapist. With their assessment of my wheelchair they decided that it was too big for me and decided to find one that was right for me. So I got loaned one to see if its the right one. they also wanted to see my daily bed routines and suggested ways to improve it.
This is how I get around the house:

not the safest but temporarily its decent.

The next appointment is on next Monday so hopefully they can help improve my life now.

Monday, April 4, 2011

3 April 2011

It was Sunday but I didn't want to get up early for church as I was pretty tired from the day before. 

Almerick, Goddard and his friend Michael came over and we played some dominion which I won by a single point twice (which was lucky that the game ended as another turn would mean lose).  thanks guys for coming over. 

Thanks Scott's wife for the gift. I have started reading it. Scott you have to go to my dinner and bring your wife. You too Norman

I'm looking forward to the dinner event as I will get to see almost everyone :)

Sunday, April 3, 2011

Exhausting day

2 April 2011

A tiring day was had by me. It was Belinda's 21st BBQ at a park. Wilson came over in the morning before we left for Bel's. Lo and Seney came by as well to chat a bit before it was time to leave.

The BBQ was awesome fun too bad we had to leave early to go to a dinner. Her cake looked awesome and it was tasty too. I didn't want to get too full as we had a dinner. 

We (wilson,Lo, catherina, Seney and I) needed go to jacqueline's house for a housewarming where she cooked us dinner. She lives like an hour drive away though I was asleep for most of the trip there and back.
The stew she cooked was so nice tasting to me, it was juicy and tender. After the dinner we played a gory game on the xbox called 'limbo'

As for sunday I am going to write the blog later on. 

Friday, April 1, 2011

April fools day

1 April 2011

Since yesterday was uneventful i will instead blog about today. Today is Friday Friday and tomorrow is Saturday :)

My folks came over this morning. After they left I went to nap again as i was tired and felt a little unwell.

Meals seem to taste good here though the portions leave me feeling over full. I don't like the feeling so I usually try and eat till 90%. This was dinner:
it was a seafood stir fried noodles. In the future i'll upload on faebook so friend me if you want to see them.

Wilson came over for a visit. It's nice talking to him. When he left i went to shower.

 My uncle has a wheeled bath chair and he brought it to my room. I would have to sit on it and get pushed to the shower. In the shower I now use a hose thing to actually put water on myself, I'll provide pics tomorrow.