Hope Love Cure

If not today then perhaps tomorrow!

Seizures increased as Piper was weaned  from her eleventh anticonvulsant, after terrible side effects leaving her in an almost  vegetated state, so highly medicated. We now continue with three antis a day as we wait for a prescription to be sent from the royal childrens hospital to include number 12,

we are desperately  wanting to try something else which may bring back our little one, and perhaps reduce her seizures although so apprehensive as this something else is Sabril the anticonvulsant that could effect Piper's sight. 
We listen to Piper whimper and watch her strength diminish. 
 My exhausted little one try's so hard to rest! I've struggled to tell if Piper is awake or asleep today, her eyes slightly open,  quietly watching her world! 
I carry an exhausted floppy little body to bed, Willow assisted  by wheeling Piper's iv pole behind us! we connect the tubes and Piper receives her last feed for the evening, We start to read Piper a bedtime story although she's already asleep! we know this as the cracklings has started in her chest, bubbles are forming at her mouth as she begins to struggle with secretions, we change Piper's position and assist with a little suction, Piper now placed on her side is comfortable once more ready for sleep, finally relaxed and off to sleep Willow and I smile at Piper's  most lady like behavior as she loudly snores, we all hop into bed, Willow rolls over and I reach for my computer to continue on where I left off on my quest for answers for Piper.
As we all settle  Piper's hands fly above her head of course it grabs my attention and I watch for her next move, her arm lowers almost in slow motion and her body relaxes once again, a moment later Piper's breath is taken away her eyes have popped open her face in a state of shock! Legs and arms are violently shaking and Piper appears to be struggling for breath,  the shaking begins to subside although Piper's eyes still return a look of absence, after gently repeating Piper's name.. Just like that! she's back! and looking around. I kiss her gently and lye back down.
I glance around my bedroom which has slowly been taken over by machines, my house by aids and I think of how far we've come, how much this little girl has had to endure, I just wish there were something that would allow Piperto sleep to rest to reenergize. 
Pipers head growth has plateaued  it has been this way for some time, it frightens me although also drives me, I know there's a delightful little girl inside so desperately wanting to play , wanting to swallow food, hold a spoon, and embrace  her family. I know whilst nobody can tell me why this is happening, nobody can tell me what she can and can not do. 
I have written this over two days watching Piper have seizure after seizure administering emergency medications and still the seizures  continue, in four months our little girl will be three years old! She has been fighting against seizures for most of her life,  our frustration today could be followed by joy tomorrow. 
Tomorrow we may see smiles again, tomorrow Piper may roll or reach for a toy! Tomorrow she may tolerate her stander but today not unlike many others Piper remains asleep on the lounge room floor too exhausted to move! Today is just not our day. 
 
 
 
 
 
 
 
 
 

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Josh Lee | Reply 19.09.2013 15.08

You inspire me everyday Summer. My heart cries for you and piper. Keep strong and keep fighting. We will make the 9th the best night ever.

Barney from Launceston | Reply 19.09.2013 03.30

Hugs and love to you folk. You are not alone.

KATHY THOMSON | Reply 18.09.2013 14.45

MAY GOD GIVE YOU ALL THE STRENGTH TO SEE THIS THROUGH!

Tammy Bourke | Reply 18.09.2013 14.22

You and your beautiful family are amazing and I hope you get some answers soon to help the stunning Miss Piper. πŸ’—πŸ’—πŸ™

Ben | Reply 18.09.2013 14.17

Now counting my blessings and sending prayer your way.

Bec Hawson | Reply 18.09.2013 14.13

Here's to hoping for a new tomorrow. Sending love xx

Bron | Reply 18.09.2013 12.02

Read this through a friend's post - best wishes to you all & especially little Piper - may tomorrow be the start of a grand life for her... & for u. xoxo

Skye Sparkes | Reply 18.09.2013 11.45

Our precious little Pipey will be back and smiling soon. We love you little girl, keep fighting.xx

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Latest comments

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief
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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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