Hope Love Cure

As one door closes... ❤

I guess is fair to say we were hoping for something a little more positive than received during our last visit, we appreciate the complexity of Piper and all the medical  profession are doing for us, although it would be nice  to leave just one appointment without Michael and I turning to each other disheartened and in disbelief! 

Unfortunately our dear little girl has increased her number of seizures per day, this along with the varied seizure types has brought greater concern. Results from Harvard have shown 235 rare variants, in Pipers tests for whole exome sequencing, we realise we may never gain the answers we are looking for, although we also know great things are happening every day  in medical science as research for Piper continues. 
 
Pipers development has certainly improved since her state of regression, with greater head control and almost a commando crawl happening :) piper has started to vocalise and although it takes a bit of work, smiles are starting to return :) 
 
We were told many things  may or may not be possible for Piper.
 Piper may not walk, talk , sit or crawl, may not regain the ability to swallow fluids appropriately and  may in fact  loose the ability to perform current skills, MAY Not! There's also a MAY in there ;) 
 
Does she know you? We'd like to think so.. Will she hug you? No... Piper can not hug or kiss or show affection, although I believe if her body would physically allow her to, she certainly would! Pipers eyes light up and her mouth opens,  I know all these things are in there! Waiting to come out! 
We were briefed on SUDEP  and the increased mortality rate in children like Piper, through  research we were well aware of this, I think you take things in differently when it's spoken out loud,  that was a little difficult to hear, especially for Pipers Daddy.   like all things medical, you must be informed of the worst that could happen.
 
Although we couldn't help feeling disheartened our spirits were soon lifted with great things to come...

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Bec Miller | Reply 29.12.2012 13.56

Wow guys, what a lot to take in. Focus on the positives and the 'may's like you are doing. What a little precious girl she is :)

Painy & Summer 09.01.2013 03.49

Thank you so much Bec, we really appreciate you contacting us, would very much like to hear of your little princesses journey and the techniques in which helped to assist her in eating.
Best wishes to you and your precious family πŸ’œ

Mel Gardner | Reply 27.12.2012 19.12

Piper already proves them wrong every day in her little ways, look at her eating an icy pole!!! I believe she will fight even harder for you. Xoxoxo

Mick & Sum 09.01.2013 03.55

You always make our spirits high!
Thanks Mel πŸ’œ much love! x

Pauls | Reply 27.12.2012 15.18

Im sure many great things are still to come for a such a special family Xx Your amazing people and amazing things can will happen in time! <3

Pain family 09.01.2013 04.20

So thankful for you beautiful girl! πŸ’œ the strength shown by your family inspires us! Your kind heart and generous nature astound me!
Our love & thanks xxxx

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22.05 | 13:21

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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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