Hope Love Cure

Where to from here?

Today I lie next to my baby girl and wonder when life became so complicated, after discussions with our speech therapist I can't help but wonder if Piper will ever be able to communicate, I'm so grateful for her smiles, although I really want more! I just want to hear something, to know we're back on track, I want to hear chatter and giggles from the toy room between our girls..and  I do not want to feel so completely selfish for wanting this. I guess it's fair to say I'm having one of those days! 

The new plan is to perhaps introduce means of communication, as piper is now 2... I feel my body cringe every time I hear this.. Piper is now 2! She should be...... We now need to...... It feels as though we are waiting,  just to see what happens as time slips away, now I know some things  can only be explained with time and development, although I can't help feeling helpless. 
Piper has little control of her hands although able to grasp a toy she is unable to control particular movements, therefore the use of sign language or even iPad communication seems unlikely, there is so much this little girls eyes will say although so much more I want to know. 
 
Where to from here?
Onwards and upwards :) 
The metabolic team will remove a skin sample from Piper at the time of her PEG operation, this they will use as required for further testing. 
Gene testing continues in Boston through Monash, and we like many others continue to hope for a cure.
 
Piper will be heading back to the Royal Children's shortly to begin the ketogenic diet, Pipers blood ketone and blood sugar levels will be monitored daily and radiological testing will also take place during her stay.  We are extremely anxious to get started and pray this may give our little princess the break she so deserves. 
 
 
 
 
 
 

 
 

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Lyn | Reply 21.03.2013 23.59

Hi Summer,Thinking of you often.Just found Pipers page.Praying all those people looking after her will find new and innovative ways to help her.xoxoxoxo

antlee | Reply 12.03.2013 09.16

Keep fighting guys, doing so well. Give us a yell if you need anything

Mick & Sum 18.03.2013 07.23

Thank you Ant! your kind words are always appreciated x

Chris I'Anson | Reply 12.03.2013 09.14

This was a lovely little read on the tram home. I enjoy the way you put out lives in perspective. You inspire us. see you soon xo

Summer 18.03.2013 07.25

You always say the sweetest things Xx look forward to seeing you soon :)

Mick Hemming | Reply 12.03.2013 09.04

My heart goes out to u guys. I hope all goes well

Mick & Sum 18.03.2013 07.27

Thanks Mick! We really appreciate that :) hope you are well x

Skye Sparkes | Reply 12.03.2013 08.38

Isn't she lucky that she has an amazing family that wont give up. Love you.xx

Mick & Sum 18.03.2013 07.28

Love you! x look forward to catching up, when we return πŸ’œ

Sal | Reply 12.03.2013 07.35

Hang in there, Sum! While you await results, technology is improving every day enabling kids of all levels & abilities to communicate in new & innovative ways.

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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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