Upcoming fundraiser…

We are excited to let you all know about the latest fundraiser for Ethan’s scholarship at the Telethon Institute of Child Health Research.

Two wonderful mummies and friends of ours, Trudy Magerl and Lianne Clark, are holding a sausage sizzle on Sunday 2 December at the Masters Bibra Lake store from 11am – 2pm. Trudy and Lianne have been keen to contribute since Ethan was diagnosed, and we are so grateful to them for volunteering their time and snagger cooking expertise to raise money for the scholarship!

What a great way to combine lunch, a bit of shopping and supporting a fabulous cause! We hope to see you there.

An update on Ethan’s menu

We are making progress with Ethan’s feeding regime!

He still has the NG tube in, but the way we are administering his feeds has changed. Previously, Ethan was fed all of his daily calorie requirements (700ml of liquid formula) overnight at a slow rate via a feed pump. And during the day we did hourly flushes of water by syringe into his NG tube to meet his fluid requirements.

Now, Ethan is having his liquid formula in five bolus feeds given three hourly throughout the day. So he has breakfast, lunch, dinner, a snack and supper. These feeds are 140ml each, with each one given over one hour on the feed pump via his NG tube. We flush water down his NG tube by syringe before and after each feed so we still meet his fluid requirements. And once he has had his supper in bed, we can turn the feed pump off and leave him to sleep peacefully.

While it may not sound like a big deal, this is a huge step forward for Ethan and us. It means his stomach is able to adjust to a more “normal” regime (similar to a formula fed baby) and he is developing a more regular appetite. Slowly, we will be able to offer purée food prior to each feed and as he learns to eat again, we can slowly reduce the liquid feeds. We are also hoping to give the current feeds over half an hour on the feed pump (rather than the current hour).

We are so proud of how Ethan is dealing with the changes…he sits in a little stroller and watches a DVD while the pump is attached and the formula is going in. Very patient of him! He must like having a nice full tummy.

Leeming Senior High School

Last week Ethan, my mum Maureen and I had the pleasure of attending the Year 12 graduation assembly at Leeming Senior High School (my old high school). We were invited to attend to accept a cheque from a wonderful group of Year 11 and 12 students who generously decided to donate the proceeds from their class businesses to Ethan’s scholarship fund. The students were led by the lovely Ms Guadagnino, my Political and Legal Studies teacher back when I was a student!

Despite the fact he was overtired and cranky, Ethan couldn’t miss the opportunity to enjoy the limelight. He walked to the stage all by himself, then held my hand to accept the cheque, then tried to walk off right down the middle of the assembly! I had the graceful task of grabbing him (over my large bump) and carrying him kicking and screaming out of the assembly…anyway the main thing is that we were there and that the school was able to see Ethan. And he fell asleep in Nana’s arms shortly after. Thankfully.

I must admit I got a bit emotional when the students spoke and explained about Ethan and why they had chosen to support his fund. It was so touching to see students who were in exactly the same place I was 12 odd years ago show such maturity, compassion and consideration. They are a credit to their school, their teachers and of course their parents.

Lastly – thank you Ms G for all your efforts in organising the fundraising. Your enthusiasm for teaching and your students’ learning is amazing…and we are so grateful for your support.