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!💜the 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