Hope Love Cure

It's starting!! the loan is through, permits are through and work is underway πŸŽ‰ soon our little princess will have her very own space for therapy, aids and equipment!

Daddy and Grae with the help from our awesome neighbour Nick have been busy preparing for the concrete slab and shed.#stageone #allinaweekendswork #itsfinallyhappening πŸ’œ #hopeforpiper #ourpurpleprincess πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

It's been such a long wait! And yesterday just felt like Christmas! the boys from Aidacare along with our Physio, occupational therapist and support staff were here to deliver and adjust Piper's first! hot sparkle pink wheel chair 💖 we were beyond thrilled to see little Piper sitting beautifully straight, and supported in a chair designed especially for her needs. She too felt very special with all the attention, focus and fuss involved in receiving these shiny new wheels. And what makes this moment so wonderfully special is the reminder of those who assisted in achieving such a precious, expensive, life changing piece of equipment, a dream became a reality because of you! Our wonderful team of therapist and support workers submitting applications and gaining the approval of partial funds through the governments (SWEP) statewide equipment program, what a truly valuable service to have ❤️ The incredible lake primary school's SRC, students who sold icy poles every Tuesday and of course the amazing little people who enjoyed them :) raising $500, such an extraordinary beautiful effort 💙💛️xox CHAILIS's Mr John Burfitt who works tirelessly for many families again came to assist ours, collecting donations week after week to ensure piper would receive her chair 💚 Two wonderful organisation 'Wings for Kids' and 'Bendigo Health' became our light! offering the extra funds required to purchase Piper's wheelchair 💜 And here we are today feeling so blessed and thankful to our entire community, for every kind donation and each incredibly generous heart, giving our little girl such a precious gift, for this we thank you! 💖😘️xoxo
It's been quite difficult for mummy to update on my weeks, my days, since my last hospital stay we've experienced so many ups and downs, I haven't quite returned to my happy little self. It started with constant involuntary twitches (spasms) something we'd not experienced in such frequency, not my usual array of "normal daily seizures" which lead mummy, daddy and my pediatrician to fear the firing within my brain, where and why? as seems typical with all my complexity we're still unclear as to why theses sudden changes in activity occur, and why at times we struggled to gain even a moments relief through emergency medications, why none of my meds were working. I returned home with an addition to my medication regime, another medication with another side effect for me to fight, and when my constant vomiting and choking began to effect my breathing mummy decided no more, so we again tweaked my usual medications and hoped that would be enough to break the unusual cluster. Slowly I began to feel like me, I could breath again without the constant suction, scooping and fear. I could look at my family rather than stare expressionless at the ceiling, and I began to move and jiggle a little enjoying my bath time, I'd not done this in weeks! my family would look at me with sadness and wonder where I'd gone, I was right here, I'm always here, fighting to get out! to get back! My seizures now prolonged displaying again as the more familiar tonic clonic, developing towards the end into an absent seizure. Sometimes I'll recover on my own, for the days that I struggle mummy will help me back through emergency medication. It's been a horrible couple of months, I make progress in my day only to slip back into darkness, the darkness that takes away my little kicks, claps and smiles. I happily hold my rattle which has been placed into my hand, after a moment it falls and I try so hard to join my hands until they connect to clap! I know I'm clever! I held my rattle! and I get excited that my hands are connecting, I'm clapping! everyone is cheering! and I'm smiling and clapping, and then I screech.... a horrible breath taking, piercing sound which drops my hands to my side and leaves me powerless once more. So full of joy, communicating with my world one moment, the next I'm left to stare, with no control, with eyes wide, with a broken little heart wondering when my next chance will return to shine . It's been a frustrating slow and hard little road, yet our little fighter continues to break through, our strength and smiles are creeping back and more importantly our baby girl just keeps Swimming ️xox Thank you all for your support and love, we're rolling and smiling today, :) we will move mountains once more xPurple heart #stillswimming #stillfighting #hopeforpiper

My heart smiled today and I can't begin to tell you how truly touched we are, so overwhelmed to read this very special note along with a very generous $200 donation towards our little princess Piper 

 What a beautiful young lady! Such wisdom, empathy and generosity for such a young girl. My heart is bursting with pride with the knowledge that such a young person could display such incredible compassion and heart.
Julia Villiva a student at our eldest daughters primary school raised funds for Piper through umpiring at her local sporting club. 
And the words Julia chose to sign off 
The most important thing is to enjoy your life,
To be happy it's all that matters πŸ’œ
....sometimes we all need this gentle reminder.
We think Julia is beyond amazing! We do not know many children of this age who would be willing to part with such substantial earnings to support another child. 
this is one little girl who has truly touched our hearts πŸ’–
 A young girl who writes; I know how much pain it is to see a family member suffer from illness. 
I wish I could change the world for this gorgeous girl  xoxo 
Our heart, bursting and breaking all at once. ❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️❀️
#justbeautiful #heart #love 
Thank you for all the beautiful well wishes for Piper, our little girl made to feel so very special and loved 💜💜x The seizures have slowed to a manageable pace, presenting with more intensity yet familiarity, we return home with a refreshed plan in place, adjusting to the new medication may take a little while, a few tears and a few extra seizures along the way, although we are certainly heading in the right direction and so happy to be home.

Latest comments

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

13.10 | 11:42

Love yo piper to the moon and back