Hope Love Cure

New year, new HOPE!

The last few days has seen Piper regain a little strength which is lovely after such a difficult time with our Mildura heat, a trigger for her seizures becoming all too common, we now take extra caution since one of Pipers anticonvulsants (Topamax) has been increased and has its own risk of heat sensitivity, this along with Piper's inability to regulate her body temperature will find us indoors and under the air-conditioner for much of the Summer, which is a little disappointing with so many lovely days to enjoy outdoors as a family, Santa did however bring lots of wonderful sensory items which we plan to explore indoors :) Piper is starting to roll over again and I had to quiz both Willow and her cousin yesterday if they had moved Piper from her placed position, our clever determined little poppet had rolled to where the girls were playing on the floor. :)
Today Piper made sounds! Now I know this seems a little bit nothing although noise from Piper is so incredibly wonderful, I find myself waiting with bated breath for the smallest sound and the hope that another will soon follow, on praise Piper continues to smile and arch her back with joy,

It's so hard to comprehend what is happening to our baby girl, we know we shouldn't although this time of year we find ourselves sitting back thinking of those milestones unreached, we long to watch our little girls play and create mischief together, We watch Willow with her cousins and Pipers excitement as she watches them play. As I prepare willow for her first year of school there is some sorrow knowing this too should be Pipers first year of kindergarten, We are quick to realize these thoughts do not help anybody, so we push them to the back of our mind and continue on with our kind of normal. :)

A new day and Piper wakes choking I roll her to her side suctioning the saliva from her mouth, I then feel under the blankets for her legs and move them to the same position as her body, Pipers arm hanging back is also brought forward.
Some days are obviously better than others, sometimes all strength is gone,

Piper fought multiple seizures throughout the day and although quite brief they each left her exhausted, by the evening Piper was continuously reaching and requiring continuous suction, and now dare I say her eyes have fallen, she is finally able to rest. The retching is becoming quite an issue and after venting Piper's tube, placing her on the nebulizer, and assisting with percussion (CPT-Chest Physical Therapy) I am still unable to alleviate her distressed.

This year we have a chance, to try all that is available to us, and whilst we'll never give up on our little girl there is much comfort in knowing we still have somewhere left to go.
With thanks to the heart of a wonderful community we now have a path to follow πŸ’œ New HOPE,
We hope 2014 will see personalized research for Piper through Monash and Harvard, we hope to see Piper receive specialised treatment not yet available in Australia as we strive for a greater quality of life.
Thank you to all our amazing supporters those incredible people who organized fundraisers! the precious children who raised funds, gave their pocket money, wrote cards and drew pictures for Piper, you truly touched our heart! Most wonderful is knowing the future is in good hands these beautifully raised caring little people will create a better world.
For every cent, every word of encouragement, every helping hand we are so very grateful! You are making this possible!
last year we met the most extraordinary giving generous people Thank you for bringing light to our life xxxxxx thank you for sharing our hope for Piper πŸ’œ thank you for allowing us to try




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fiona black | Reply 07.01.2014 13:58

Beautiful sum, we wish you all the world. Xxxx

Skye Sparkes | Reply 07.01.2014 06:31

This will be her year. Piper making noise is the most beautiful sound, and I am still certain that she tried to say Skye the other dayπŸ˜‰πŸ’œπŸ’œπŸ’œπŸ’œ

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11.11 | 07:44

hi, my name is Lexi Crutchfield i go to school with Willow, i wish you all the best and i hope piper can become the best she can be.

22.05 | 13:21

Get Physiotherapy Equipments for instant pain relief

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

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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