Hope Love Cure

Our Purple Princess Catch up!

It's been quite a couple of weeks, Piper has spent most of her nights waking from seizures and struggling to cough, - those little muscles need to start assisting in this process, helping to cough out mucus rather than let it settle in for another round of bronchitis, the nasogastric tube was certainly not helping to clear Piper’s airway and after listening to the continuous sounds of obvious distress my husband and I decided at 4am to remove the tube.
I managed to give Piper her medicine orally that morning, and we decided that's it! Today it's going to happen! We'll get Piper drinking again, if a new born baby is able to develop the notion surely the familiarity will come back to piper!.. Needless to say the result of our desperate attempt although encouraging, Piper was still unable to sustain enough fluid.
Piper’s skin red and irritated from her facial tape, was given a rest and then back to hospital for a chest x-ray and yet another round of antibiotics, and yes.. our only option was to reinsert the nasogastric tube :( Once again piper continues to claw at her face in the hope to pull it straight back out! as we continue to purchase every soft sipper cup we can find, in the hope it'll be the one that brings back Piper’s ability to suck and swallow.
I sleep holding Piper’s arms as it’s the only way I’m able to prevent her attempts to remove the tube.
Last night I woke to the sound of coughing! I'd obviously fallen into a deep sleep, letting go of Pipers hands, so there was Pipers tube, dangling from her cheek, I was so frustrated as I knew piper would now be spending another day in hospital, although I could only smile as she looked so proud of herself and her accomplishment, arching her back and trying to kick her legs in excitement!

It's getting hard to remember Pipers last seizure free day, although she's recovering well, and we still manage a little Physio most days.


The past weeks have given us plenty to smile about, Piper was well enough to make it to her first kinder gym session through early intervention, we received an overwhelming 3000 hits and the most beautiful messages of support on our site, fb friends shared Pipers story including Mildura’s very own, First Strokes Swim School and an excited Aunty Stace received tweets offering prayers and words of support after sharing Pipers page through twitter, amongst those helping to share Pipers story, were Kelly Racing, Nathan Brown, Matthew Lloyd, Matt Cowdrey, Dale Thomas, Jason Stevens, Lauren Jackson, Ajay Rochester, The Blocks Dale & Sophie and Brad & Lara, Nathan Jollife, Charlotte Dawson, Father Bob, A Fresh Legacy and a father whose child has followed a similar path, along with a family who has similar struggles, I cannot thank these people enough! for reaching out to us, and sharing their story.

 

We received a telephone call to say Piper is able to be assessed for a walker, our appointment for this will be next month, we are beyond excited!

To think this month our little girl was given the chance to stand with a new aid, and now she may feel what it’s like to move! 

 

We are currently searching for different therapies which may be of benefit to Piper, to strengthen muscles and awaken the brain, we are looking at treatments which work towards creating new connections, and are most interested in The Anat Baniel Method and that of Vojta treatment.

 

I must say I like Anat Baniel’s slogan of "making the impossible possible!" Although it’s just a matter of finding the treatment which will be of most benefit to Piper, as this all comes at quite a cost, our dear friends and family are working towards a fundraiser to assist in helping us achieve our future goal.  Over the next few months please keep an eye out for our new logo, as we work towards the brightest future possible for Our Purple Princess x  

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22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief
https://ultracarepro.in/products/

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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

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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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13.10 | 11:42

Love yo piper to the moon and back

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