Hope Love Cure

Forever grateful, forever thankful to the Sunraysia Comm...

Today our baby girl had her new feeding tube mic-key button inserted, a much nicer more compact device which will hopefully be more comfortable with less chance of removal by little hands, the tube does not dangle down nor does it need to be tucked and strapped into clothing, should this mic-key button be removed accidentally or due to replacement it is no longer necessary for piper to  undergo anesthetic or a gastroscopy the new retention device will be replaced back through the stomach held in place by an inflatable gastric balloon filled with water.

After Surgery and a new PEG a meeting took place with our Neurologist  informing us the metabolic team are unwilling to take the risk of trying Piper on Epilim The last of the trialled anticonvulsants.
We now move ahead with biopsies providing our appointment next week with professor Ingrid Scheffer does not uncover positive results from the trials and tests preformed through research.
Piper underwent an EEG today in order to determine  if the pattern of electrical activity within the brain has changed, we will receive results of this next week. 
Everything tends to move at such a slow pace, I guess thats unavoidable as waiting and watching is all we along with medical experts can do, we wait for testing, we wait for research, and we wait for medications to take affect.
Remarkably we now stand in a much brighter position with thanks to our dear friends, family and community  the prospect of overseas treatment no longer seems so completely out of reach! 
From an idea to fundraise, I find the reality of what came to be so incredibly humbling and heartwarming, for people to go out of their way to donate products services, time and money all in support of two little girls! 
our dear friends using their weekends to pound the pavement in search of donations and support, their only ambition to make our evening a success!
The deliveries of sporting memorabilia from afar with  thanks to Travis & Maja and Mark & Emma.
 the generous businesses and community of Sunraysia willing to do anything in  order to help! 
Those who do not know our little girl although know and share her journey you are the most extraordinary of all! our lives are truly enriched by your kindness and support.
Unfortunately we were unable to attend  A Night for the purple princesses, after Piper developed  breath holding seizures, the fundraising evening dedicated  to Piper along with another little local girl Summer Lee a huge success! 
Our dear friends and family  again jumping in to help with photography, waitressing babysitting, sales, tickets and paperwork on the night, the behind the scenes made our evening truly wonderful. The preparation and hours spent at the venue so greatly appreciated  Lucy, Clare, Zarah, Zoe, Steph, Sophie  Fiona, Tracey, Tanya, Jasmine, Bec, Christal, Katrina, Stacey, Claire, Skye, Carrissa , Pauline, Ben, Sarah, Jacki, Krista, Annette, Christopher, Laura, Glenn, Grandad Bernie, Nana  Barb  &  Grae, Liz & Glen, Grandma, Poppa  the team of Select Events & Boss Catering, many hands make light work and you guys were truly fantastic we are so very grateful for the effort and time you gave to make our evening sparkle.
Uncle Glenn you gave so much to our evening yourself Mr Sedgeman and Mr Gledhill  helping to form our little committee we are most grateful for the time that went into organizing such a special evening.
The venue Mildura football clubs function centre Anthony Parr and volunteer staff, the band  Josh Lee, Deejay (Daniel Storer) and Chappy (Brian Chapman) of Ash Road and of course Sunnyland Press, Tall Poppy's Andrew Peace Wines, McGuigans, Thirsty Camel, GSD Architects, Lisa Clark, McGowan Signs, all going above and beyond! 
Shaddy, Bill Sauer and Robert Stephens, Cheryl Reberger of Collie & Tierney we thank you for giving us your time, assistance and expertise.
Our beautiful family and extended family who continue to offer their unconditional love and support we love and appreciate you all so much! To those who traveled to be by our side or have simply been there with a kind word we thank you!<3 x
To the dear friends  who offered to take raffle books, wrist bands  and collection tins the businesses, sporting venues and schools kindly allowing  them to be sold we thank you!πŸ’œthe casual dress and purple days held through our local community truly touching x
It is with thanks to all who supported and sponsored our evening  and the amazing Charitable Mr John Burfitt that we are even able to  consider overseas options otherwise unavailable within Australia, it is with thanks to you' we have a new sense of hope! We take that leap forward! a chance to know we've tried everything possible for our little girl!
 I don't know how we begin to say thank you for such an incredible gift.
please know we are forever grateful, forever thankful for the precious giving people helping to make the impossible possible for our purple princess Piper xx 

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Erin | Reply 23.11.2013 15:02

Beautiful xx

Annette Gray | Reply 23.11.2013 13:38

I think Piper is the gift. <3

Sal | Reply 23.11.2013 13:04

There's so much more good in the world, than we realise.

Skye Sparkes | Reply 23.11.2013 12:15

Don't thank me I would do it again and more in a heartbeat. Watch out Pipey, Aunty Skye doesn't need to be scared of that dangly peg anymore, I'm coming for you😘

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11.11 | 07:44

hi, my name is Lexi Crutchfield i go to school with Willow, i wish you all the best and i hope piper can become the best she can be.

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief

07.02 | 09:55

Oh Summer, you are doing an amazing job with Pipes & all of your family. Keep at it. The same goes for you too Piper. Loads of love from over here. Rikki. Xxx

06.02 | 05:38

Piper is one tough little cookie, I have no doubt at all that she’ll continue to grow and surprise us all. Love you Princess πŸ‘‘ Piper. πŸ’œ

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