Red Carpet

We were invited to Griffith University Graduate Film Festival to have a first look at our documentary at The Regent Theatre in Brisbane CBD. The filming which started earlier this year was a whole new experience for all of us. The film crew spent hours and days with us. Therapies, Pia’s childcare, Big Brother-like two-day-shoot (Kye called it film crew’s sleep-over ), Kye’s rugby games, birthday, and so on. Seeing how all those footage were put in 10 minutes documentary was another indescribable experience! Pia had her hair done at the hairdresser and looked like a movie star in her cute little black dress. She was smiling away just as we were entering the theatre as if she was an actress walking down the red carpet! We were vary pleased with what we saw. We would like to thank very dedicated film crew for their fantastic job and for giving us this opportunity to share our story with others. Our first screening will be at Pia’s childcare end of the year concert next Friday. Longer version of the doco’s on the way as well and once that’s done, we will start organising a screening event. We are very excited and looking forward to sharing our story with as many people as possible.

Our Very First Fundraiser

It was a very spacial night for us. Our very first fund-raising event was a huge success, raising $4973! It was a BreakUp Party for Kye’s school prep boys and their families at Bumbles Cafe in Budds Beach, Gold Coast. With around 60 people plus as many kids, we had food, drink, kids had some sports activity and face painting, an exciting visit of fire trucks (yes! 2 of them!) balloons with the prizes inside, we had such a great time. And more than that, we felt so blessed to have such a fantastic support. Very special thanks to our friend, Kate for all her effort to make this event come true and made it such a memorable night. Thanks also to the families who donated prizes and their services, to Surfer’s Paradise Fire Department for their time to make the night so special for our kids, to my friends who helped with the preparation and on the night, and to the beautiful children who wanted to know more about our Pia and raised their money themselves for her, it was so special! And thank you to all who turned up for your generosity and support!

More photos here.

Bike-a-Thon

We were invited to assembly at Kye’s school for the presentation of the cheque prep boys have raised for us on their Bike-A-Thon on 17 October. 60 boys from 3 prep classes got on their bicycles, some still with their training wheels on, and cycled around the tracks for fundraising. Unfortunately, the rain started to come down, but nothing stopped those determined boys! They’ve raised $2337 with Kye’s class raising $1250.90! We have received a cheque for $1210, other half was donated to the Project Sankamap to help teachers in Bougainville with math teaching resources. Thank you so much for the boys and their year 6 buddies who helped them throughout the event in the rain, their sponsors and the school for organising such a fantastic event!

Stay Awake, Keep Smiling

Last Tuesday, Pia had an over-night video EEG at Mater Children’s Hospital in Brisbane. She developed epileptic seizure about a year ago (or maybe even longer) and has been on medication since . It started off as a “startle” when she was awakening from her sleep and the startle became bigger and bigger. She gets really stiff, like I can’t make her bend her knees even with my full force. Look of confusion and scare in her eyes and that could last up to 5-10 minutes. The test was to see what is happening during the night. Fortunately enough, despite all her physical challenges, she never had to be admitted to a hospital, so it was our first hospital stay.

We checked in at 2 pm, and soon 20 electrodes were placed on her scalp and all bandaged up. She was a little social butterfly, smiling and giggling to all the nurses coming in to the room to check her out, until she fell asleep eating her dinner. She slept more than usual, but how good the sleep was, I don’t know. She was twitching a lot that I thought could have been seizures. Watching her sleep in hospital bed with her head bandaged up, was difficult. She looked so pale and ill.

We are still waiting for the result, but what we already know is that it showed a lot of abnormal brain activities. Even her condition that I didn’t think was seizure is likely to be a seizure.
The doctor increased the dosage of her current medication to double.

Since then, she has been more tired and sleepier. Smiles are hard to come by. I’m just hoping it’s because of the cold, not the side effect of the medication. Only time will tell.