Ed's Daily Progress

Surf and School

A seven week stint at home, the longest in almost two years has allowed me to sort out an enrolment in school for Ed at Arranounbai Special school with school transport, a 2 week familyholiday in Shoal Bay at the end of September, a weekend of respite in Bear Cottage whilst I headed south across the border to Melbourne, some access to other community service program’s to assist us in caring for Ed at home and begin the enrolment process into University to study Psychology- that’s for me not him.

But like all good things, it came to an end last Thursday with another line infection, this time in both lines and one line has grown two infections. And so after almost 20 months of having a line inserted into his chest, countless admissions to hospital for IV antibiotics due to infection, thousands of temperature checks the last infection has landed us back here at Club WestMed and finally a decision to have it removed which is happening as I type.

The upside is he’ll be able to resume his surfing career or even just begin by being able to access the hydrotherapy pool at his school on a weekly basis with his classmates. The down side is we’re back to needles for his weekly blood tests and canulas in his arm or foot during hospital admissions. Since the line is so septic it’s not possible to remove and replace the line in the same procedure as he needs sometime to clear the infection from his body but we’re going to try and hold off for a while, even try and get through Christmas without anything and then think about either replacing it or inserting a Port under the skin on his chest depending in what procedures and drugs requirements he’ll need in the next little while. It will be great to hopefully enjoy the Christmas break without worrying about infections, temperatures, turning septic quickly although having said that I’m sure our little guy will find some other way to be rare and unique.

It’s planned he’ll be only in a few more days on antibiotics and then home by the end of the week in in time for school and next week’s swimming lessons- that’s my plan, hope it’s his too.

Here are the final pics with his line in.



Sent from my iPad

Ed's Daily Progress


I have finally tied up all of the loose ends of such a special day and can provide a long overdue up date now that the silent auction prizes accounted for, returned cake tins, washing baskets, lost bags, thank-you’s sent and above all recovered from the enormous overwhelming feeling the day inspired in me.


For those of you that saw Ed on the day you may have noticed our little guy quite affected by the heat which was a stark reminder of the slow but inevitable decline caused by NPC, obviously very difficult to watch as a parent. I am pleased to report that he has turned a bit of a corner for the better and seems to be really benefitting from the couple of hours each morning of stimulation at either school, family day care or time with the lovely Jannine at play group. He’s actually in really good spirits this week and looking forward to his “big boy holiday” at Bear Cottage this weekend whilst I make a solo voyage to Melbourne for a mini break- but more on that later.


I am very amazed and excited to announce that the total amount raised for the day is just under $13 000. The day would not have happened if it was not for the hard work of Sadie Davis, Angela Jackson, Nicole O’Donnell and Julie Meynell so thank-you very much lovely ladies for your care, hard work, love and support.


To follow is an approximate breakdown of the stalls along with the names of those amazing people who made each of these stalls the success they were:


Jumping Castle:                                 $875

The Edmunds Family; The Longstaff Family; The Ryerson Family

Lemonade Stall and Lucky Dip:       $250

The Edmunds Family


BBQ:                                                   $875

The McKenzie Family; The Hamilton/Glinsky Family; The Pavely Family; The Hewson Family; Ralph O’Donnell for the loan of the BBQ


Cake Stall:                                          $985

Julie Meynell and Angela Jackson



Book Stall:                                          $880

Nicole O’Donnell and Sadie Davis


Toy Stall:                                            $824

Amanda Keirsey and Paula Walls


Silent Auction:                                   $4100

Stephanie Malone


Chocolate Guessing Competition & Verve Raffle:

Chocolates donated by Vanessa Hill

Verve Champagne and Gorge Jensen cooler donated by Jo Glinsky and ??


Chocolate and champagne raffles and gate Entry Donation: $4200


A massive thanks to Val Murray and Brian Hamer from Balgowlah Bowling Club for donating such a great venue.


I would also like to thank the following people for their generous silent Auction donations:


Amanda Kiersey- Manly Pantry Voucher

Amie Rochester & Brian Boyle: Tyrrel’s Wine box, Coffee Machine and Pods

Angela Osbon- Wiltshire BBQ

Bell Leisure- Sam Bell 2 x Mini Blue Sports and Movement Program for Pre Schoolers

Rhythm Factory -Bonita Lloyd- Rhythm Factory School Holiday Program

Brendon Atkinson- Basketball personally signed by LeBron James

Hoyts Movie Voucher x 3: Catherine and Aiden Machon

Catherine Robertson- Reiki Sessions with Catherine Robertson

Colleen Chisholm- 2 x handmade children’s quilts

Debbie McInnes- a selection of holiday reading books

Evergreen Music Ben Marshall- 5 x 30 minute private music lessons

Jacqui Manning- Life Coaching Session

Jannine Marsden- Babysitting by Jannine Marsden

Jenny Massingham Kindermusik- 1 Terms Fees

Jo Glinsky- Alfresco Emporium Homewares, Collaroy Voucher

Katie Brown Yoga Babes- Books, DVD’s and yoga classes

Kimberly and Lucinda Logstaff- Handmade Chocolate Hamper

Margaret Malone: Stylz Hair Voucher; 1 case of red wine; 1 case of white wine

Margaret Rochester: Handmade Crochet Rugs

Mario at Pro Design Builders- 2 sugar free, dairy free chocolate hampers

Nick Simmonds/ Ice Breaker Gym Gear: $150 voucher

Nick Whalan: Penfolds St Henri Shiraz 2006

Nicola Molloy- Babysitting by Nicola Molloy- Steph Malone’s friend- 4hrs

Peter Thomson & FDC: 3 bottles of wine

Peita Daly: Shirvington Interior Design- 5 hours of Interior Design Consult

Phyllis Richards: Manicure and Pedicure Voucher

Will’s and Pavely Families: Balloons Aloft Hunter Valley Gift Voucher

Yvonne Hollis: Channel No 5 Parfume

Wendy Lankford: Handmade Pearl Bracelet and Necklace