Truth be known
We longed for a day that piper would crawl walk or talk! now we simply pray for smiles as they let us know so much about our little girl, a day with smiles is a wonderful day,
each day so different
each moment so completely unpredictable.
An alert and happy little girl who fixes and follows, smiles and reaches, rolls to her side or archers her back in joy! Becomes a child who drools, has difficulty breathing is unable to lift her eyes,
unable to lift her head, unable to smile.
This floppy little girl will sleep for hours on end oblivious to her surroundings, choking, coughing vomiting while remaining asleep.
We would do anything to take the seizures away
or to take the place of our little girl.
Watching Pipers first seizure at two months we prayed so hard for it to stop, we also prayed for answers, when we returned home without any we assumed the ordeal now behind us, if a problem could not
be found then surely something so uncommon would be most unlikely to reoccur, after all that's why we take our children to hospital...for answers! certainly if anything to make them better.
For us its never been any other way!
It would seem the only certainty was indeed our ignorance
After countless investigations numerous bloods, lumbar punctures, ECG's, EEG's, MRI's, metabolic and genetic testing, 14 anticonvulsants 2 emergency
medications , biopsies , surgery, gastroenterology, xrays, fluoroscopy and the Ketogenic diet we are still no closer to understand why? why our little girl must experience such challengers,
Why we can not help her with all the advances
in modern medicine, all the extraordinary specialist, we continue to stand helpless.
I'm unsure I know how to tell our story anymore for so many parts I seem to have wrong, life is a roller coaster and we have certainly
been riding high with so much incredible support, generosity and love for Piper.
I find I have much to tell without having a clue how to begin.
I find my thoughts scrambled, my emotions raw, and I just wish I could remove
such feelings of despair
After all a week ago we had every thing wonderful to hope for.
It's been a little busy since our fundraising evening...never could we have imagine such incredible
beautiful generous support! still quite unable to believe the generous hearts of other.
From fundraising preparation to peg surgery and home. To the beginnings of a bathroom, meeting the wonderful Nick Anderson, back to hospital for an
appointment with our research professor and back to Mildura once again.
Willows kinder graduation and ballet concert a most welcome distraction, as clouds began to cast upon our days.
The hinged AFO's we
received at the start of the year for piper to use in her walker were yesterday refitted and sent to Melbourne to have the hinges closed, no steps were made. Piper once again going through a state of regression no longer able to stand supported.
Piper now has clonus at both ankles holding her feet flexed.
The AFOs will aid only to reduce spasticity.
For almost three years we've desperately searched for answers, when I think back to the beginning I think of the fear, I
also think of the things I truly believed, I believed I'd return to work, I believed that one day I'd hear mum , watch my little girls play, I believed I would witness Piper take her first steps in her purple pacer! I believed the nasogastric tube
would be removed after a few months and I believed Piper would get better.
I believed no matter how many seizures our baby had to recover from, how many times she'd faded away, she'd eventually regain the abilities as before, if we could just reduce
the seizures let her brain rest, her strength Grow, Surely then our little one will develop.
Pipers brain is broken, and the seizures continue to scar, if we could control the seizures that would be fantastic although Piper has a disease, and even
if we gain control of the seizures the disease is what's taking her away. This was our last discussion with our professor.
What we were then offered was the chance for a Harvard Scientist to look at Pipers individual cells rather than in a
group of children as had been done previously, if our professor can find someone willing to do this, there is a thirty percent chance something will be found, a path in a very complicated puzzle, an avenue of where next to go.
I will also undergo full genome sequencing to view our genes this will assist in the process of elimination ie(should we have a particular gene then it may not be possible for piper to have a particular syndrome) its our chance to know what this may be, what
this horrible disease is! Also a chance for linking a more effective medication and a chance for us to know if we are the carrier.
We were asked if we had considered more children.... Such a personal decision and one we struggled with
for some time, but no, we'd decided whilst we do not know what is wrong with Piper we would not consider another child, it was then suggested we were only young and perhaps may like to revisit our decision, as families like ours may like to consider
another child as we do not know how long we will have Piper and may like Willow to have a sibling.
Now we're all for honesty although this was starting to feel brutal and don't get me wrong our professor is truly amazing! The conversation
discussed with such good will and grace it just left me feeling a little ill.
We have decided to take this chance a twenty eight thousand dollar chance to have this extensive testing. It may bring clarity, it may bring answers, it will give
us a name and hopefully pave the path for families like ours, if we find it, hopefully others will benefit, hopefully new research will be done and another precious little person will have a chance to live a full and happy life with thanks to our purple princess,
the bravest little person I'll ever known x
The only thing I can say with certainty is we will continue to try every option available to us to give our little girl the best quality of life, so many people have given
us this amazing opportunity, we will never give up hope x