I find myself watching other children in clinic, their equipment, their mobility, I can't help but wonder.. Were you like Piper? did you once smile and reach for toys? Did you giggle and say Dad and then have it taken away? were you ever able
to give your mummy and daddy a hug a kiss or call their name? Where did you start, and what have have you learnt along the way? what can I do? How can I help?
I wish I could give every part of me, to give Piper a better life.
my
girls love each other so much and my heart skips a beat when I see Piper staring knowingly and lovingly at her big sister, or Willow struggling to lift Piper back up to her pillow, it's the little moments they share that make each day that much better!
Pipers result for Retts syndrome returned negative, its not enough anymore to pick and choose syndromes it could be? The tests that are available have been done and we again put our hopes in Professor Ingrid Sheffer's research.
I left the office quite content with that, I didn't want an answer and I didn't want to know of a disorder that would take away even more of my little girl, I know Piper has a smile that can melt a heart, and a laugh that will bring smiles to an
entire room, a curious touch and a happy soul, I know there is more! ❤
My husband became frustrated! not knowing is difficult! having the answer sometimes seems like the best possible scenario,... although I figure not knowing keeps all hope
alive.
We've ruled out many many things, Piper has been tested poked and prodded so many times I could no longer count, we've trialled eight anticonvulsants many together, along with two types of emergency medications for prolonged
seizures, there are few places left to go and we're aware of that, although a muscle and/or organ biopsy may be something worth revisiting, In the past I knew it to be painful a last resort perhaps, I also knew it would not change the outcome for Piper so
why would I put my child through unnecessary pain, right? ... Well that's how I felt! now I feel close to exhausting all avenues I consider things over and over in my mind, now I think perhaps if it is something metabolic maybe they can better
determine what piper is lacking, maybe one change is all that's needed, maybe the information will point to medication that will see Piper wean off three others that alter her attention, cause drowsiness, mood swings, dizziness, depression, anxiety,
constipation, meds that are not usually prescribed to children of her age or of a quantity on par of an adults dose.
We've never really known a drug free Piper, as medications have been her entire life. I can get over that her teeth
may rot and weaken from the medications, I can also appreciate that concern is so minute in comparison to the whole picture, I can only try and dust myself off after watching my baby code unable to handle the medications that are designed to stop
her seizures.
I can not get over not trying ... for Piper and the rest of our family, not while there's a chance Pipers quality of life may improve, also a chance we may discover something leading to a more appropriate medication or form of
treatment. ...
Piper finally went to sleep at 1am this morning after continuous seizures, each time I would roll her to her side and place my hand on her chest waiting for a breath, her mouth to relax and the colour to return to her face, the seizures
where Piper stops breathing are by far the worst and I can not help wonder just what they've taken away.