Saturday, July 7, 2012


30th June to 6th July 2012

Firstly, I would like to thank the many people who have already enquired about or purchased my new book 'Theodore and Friends - Theodore is Left Out'.  As you all know there are only one hundred copies available at present and the cost is $15 which the entire amount is being donated to The Sydney Children's Hospital Foundation Brain Tumour Fund.  My parents left contact details in the comments from my last Blog if you need to find out how to purchase a copy of the book. I am hoping that the funds that are raised through the sales of this book can go towards research into finding a cure to this dreadful disease.

I am on School Holidays at present, so it means that I do not have to race around of a morning to get ready for school in the freezing cold Canberra Winter weather.  I have however been working on my Sports Science Beginner Coaching Course, I am hoping to have it all completed by the time school returns.  I finished the second module and again achieved a score of 100%.  I only have three more modules to complete, I am making sure that I am reading everything carefully, well actually Mum is reading it all out to me because the print is small and my nystagmus in my eyes just causes everything to blur together. 

We have not been able to do much over the holidays so far because of poor Mum's knee, it has left her immobile at the moment, she can not walk too far and she is not able to drive at all.  So we have been playing some old favourite board games, watching DVD's and resting.

However, on 1st July it was a special occasion in our house because my Nana and Pop had organised Christmas in July, we even put up our Christmas Tree for the day and gave each other a small gift.  Then we had a scrumptious baked lunch with chicken rolls filled with honey and macadamia nuts, ham, roast potatoes, roast pumpkin, peas and bread rolls.  Then for dessert Uncle James and Aunty Kate brought the most amazingly, sweet and extraordinarily rich chocolate cake, which even had thick rolls of chocolate on the top.  You could not eat too large a piece because of how rich it was but when it touched your lips you salivated, it was incredible.  We also made lolly bags for everyone with Christmas stickers on them, it was a special Christmas in July.

Theodore and I in the Hummer - How exciting!
Then on the Monday night I received the most amazing surprise.  I had been a fair bit of pain during that day and felt totally exhausted but after my shower Mum told me not to get dressed in my pyjamas like I normally would.  I did not know why.  Then at 5.30pm a heard a car pull out the front of our house.  It was not any car, it was a Stretch Hummer, the same one that Nalani had for her formal last year.  Then I was told that we were going for a ride in it to look at the night lights of Canberra.  Inside the Hummer there were coloured lights that changed colour and we had drinks and lollies as well.  We drove all through the City and then up to Parliament House which is colossal, you really don't realise how huge it is until you drive around the entire surround of it.   Then we went around the lake, which was really breathtaking, I especially thought the Carillon looked incredible when it is all lit up at night.  Another thing I absolutely loved were the many trees through the city that were decorated in lights, there were even some that had rainbow ones on them.  After our totally awesome drive we then went and picked up some gourmet pizza for dinner.  It is something that I would class as a  truly precious memory especially because I got to share it with not only Mum, Dad, Nalani and Jarrett but also Nana and Pop and Uncle James and Aunty Kate.  Thank you to Sean and Peta from Canberra Hummers, your car and your hospitality are just extraordinary.  Now just a little bit about the Hummer, it stretches 36 feet and can seat up to sixteen people it has a colour lights show, CD player, DVD player and a mirrored ceiling.  If you want to do something in style or have a special event to celebrate you should go in it.

The Stretch Hummer

I had physiotherapy on Wednesday, it is always relieving to have Kaitlyn do some releasing and massage on my spine.  I sometimes wish that my appointment could go all day, then all the aches and pains in my body could be relieved.  Mum also had physiotherapy for her knee, which is healing well, she was hoping to get a brace but the size that came in was the wrong one so she is still waiting for one. 

On Wednesday I also had an appointment with my paediatrician.  He asked me how everything was going and then did some reflex testing on me.  My ankles still have not reflex action and this time my right side leg was also not as good as the left.  He talked about my pain and has increased the number of doses a day I am having of the oxycodone.  Oxycodone may relieve pain a little but it also has the dreadful side effect of causing constipation so I also have to take a medication called lactulose on a daily basis to try to prevent that.  I have to see him again on 21st August or before if I have any increased pain or new symptoms. 

In Footy Tipping I am now three ahead of Nana and hoping to hold onto that lead until the end of the competition.  I have my fingers, toes and everything else crossed that my Wests Tigers will win against the Bulldogs tonight, if they don't then they may drop out of the top eight which will mean they will have to win all their games to have a chance of making the finals. 

Next week I am going to a very special morning tea, Anna who is the publisher of my book has organised it and the people who helped make it happen are going to be there as well as a couple of special guest.  I will tell you all about it in next weeks Blog. 

Stay warm, don't dwell on the negatives in life and believe that you can achieve anything you put your mind to, you just have to have the determination and courage to do it. 


Anonymous said...

Dear Dear Dainere, We so hope all your books have been sold , our copy is taking pride of place in the study .

So sorry the school holidays are wet and cold , but it gives you and mum time to rest .

Amazing , Well done at the second module on the coaching course .

Hope mums knee is getting better every minute .

OH your day on 1st July sounded so fantastic , and all that scrumptious food , yummy .

WOW WOW how fantstic is that , what a fantastic night it would have been for you all. You look so fantstic in the car with Theodore Dainere, Meryl and i are so pleased you enjoyed it and i think its even better as it was a surprise to you .

Sorry to hear that the oxycodone dose has been increased , Dainere, PRUNE JUICE is also good for constipation , if you are allowed to have it . after my surgery and because it lasted so long the hospital actually prescribed it to me with meals hahahah, cos I had the same problem as you Dainere and after a few days ye it worked.

We hope you have a super time at Morning tea next week , a well deserved morning tea.

Ell its very cold here in Sydney , oh we had a lovely night out for a friends 21st birthday party at a lovely restaurant, it was a horrible wet and cold night but the meal and company was fantastic .

Well thats about it , so YOu take care and keep warm our dear friend .

lots of love , hugs and kisses.

stuart and meryl

Anonymous said...

Dear Dainere
We had a wonderful time celebrating Christmas in July with you all and going on the great Hummer ride. It was a beautiful family get togather we now have to cherish.

We are so pleased that you have been given more pain relief. We could see how much you were suffering and we don't want that.

Your book is absolutely beautiful and we are so proud of you. Hopefully you will sell many copies and the message it contains will help others understand what many people with disabilities have to cope with.

The weather here is lovely today but was pretty miserable yesterday.

Pop is catching up this week so far with the footy tips. We will have to watch out for him.

Enjoy the rest of your school holidays.

Lots of love
Nsn and Pop xxxxxx oooooo

Anonymous said...

Dear Daniere,
What an exciting trip you had in the Hummer. Canberra is truly a beautiful place and especially at night with all the stunning lights. How lovely that you could share that with Nan and Pop as well as the rest of your family.
I hope poor mums knee is getting better -I'm sure she is frustrated with it all.
Your Christmas in July sounds like such alot of fun. We always celebrate it abit later in July so I have that to look forward too. I always think that Christmas is such a magical time it is such a shame that it only happens once a year - its good to eat all that yummy food in the cold weather.
Lets hope this latest adjustment in your meds helps with pain and that you don't suffer too badly with the side effects.
Anyway, I've sent off am email to mum and dad so I too can proudly have a copy of your new book. I'm sure its walking out the door...
Keep warm - think like a cat and find those sunny spots away from the wind:)

Anonymous said...

Hi Dainere

Your Hummer ride looks & sounds fantastic. How exciting for you & your family to do something so special. You look gorgeous (Theodore too) & my son was impressed with the photo of the hummer!

I know that you are always in pain & so pray that there are times that it eases a little for you. Typically, medication to ease one pain causes another so good luck with it. I laughed at Stuart's Prune Juice suggestion but it works!!

I'm so excited that I ordered two copies of your book & your Mum sent a lovely email to me - I've made a new friend!! Naturally, I'll keep one & the other I want to give to Charlotte Wyse. She too has a a Blog, if you're up to it, have a look, her parents keep it up to date as she is only 4 years old. Simply gorgeous & now her Mum works with me. I'm looking forward to giving her the book but that means the holidays will be over so I hope it goes by slowly!! Anyhow, you should recieve my note tomorrow in the mail.

Well done on completing school work during your holidays. I have been doing a lot of cleaning, cooking & tidying out etc & today we went to the city. It was beautiful weather, plenty of people were out & about & we had an enjoyable day.

I'm on 77 in footytips, with our leader on 84 points. We have about 25 people in our comp & I'm no where near the top! Who did you tip for State of Origin? I'm sure your Nan & Pop tipped QLD but what about you? I tipped NSW so was disappointed with the final score. I'm sure the Blues were too.

I am glad that physio/massage helps you. I know that if it wasn't for my Pilates coach, I'd be up the creak!! She re aligns my back, massages me and educates me on which way I should move: eg, how to bend to change the bed sheets!! Your mum needs that tip too. Warm heat packs for temporary relief is good too.

Anyhow, I hope your week is good & that you make the most of the holidays. Have fun at your Morning tea. Can't wait to read your book.

Love always, Fran xoxo