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.