Hope Love Cure

Team Piper 💜
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.

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Belinda Stewart | Reply 04.06.2013 22.28

Always thinking of your princess & your beautiful family. Take care of each other, sounds like you are surrounded by so much love. Big hugs xxoo

Rebecca Miller | Reply 04.06.2013 15.48

All my thoughts are with you guys. What a precious, precious, angel you have there. And what an inspirational Mummy and Daddy.

Emma Rose | Reply 04.06.2013 00.15

Keep fighting little one.. Summer and Michael you guys are amazing. Xoxoxox

Paula Spivey | Reply 03.06.2013 16.54

Summer, you are amazing. Little Piper is so lucky to have a Mummy just like you and such a wonderful family. She is a little fighter. Take care. xx

Annette Gray | Reply 03.06.2013 15.37

I wish so much I could give you the answer you're looking for, Piper has so much love surrounding her, she will be cured, be patient, it will happen. xxxxxx

Skye Sparkes | Reply 03.06.2013 15.11

Regardless of what the outcome may eventually be, you have the most beautiful little girl who clearly adores you all. Just keep swimming Sum. Love you 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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