Hope Love Cure

We got this..;) xx

Homeward bound with our little support crew πŸŽ‰πŸ’— Neurologist, gastroenterologist, X-ray, MRI, Orthotics, Developmental Medicine, scoliosis and metabolic's Doctors all pleased with our little girls progress, the nasty seizures continuing to break through, although even their horrible hold can not take away our tremendous gains 😊 

Pipers Doctors had never before witnessed pipers big cheeky smiles, Piper usually sleeping through appointments exhausted from a seizure or seated in her pram struggling to control secretions, fighting through each crackling breath.  Pipers Developmental Medicine Doctor thanked Piper for her lovely interaction astounded by her gazing eyes and smiles, to which Piper responded with a vocal outburst which delighted us all. 
As we held our head high we proceeded to our next appointment Piper became red, ridged and began jerks, as Pipers body came to rest again the seizure would take hold, completely exhausted and limp I pushed piper through the doors of our next appointment where five doctors stood ready to examine the curvature of pipers spine, greeted by our surgeon the history of our complex child was explained, I was quick to express my disappointment as what had been a consistent presentation in the past was quite different today, and I was desperate for that to be known.
The curvature of pipers spine remains the same and will continue to be monitored, the pleasing thing about this is it has not migrated further forcing an immediate decision. 
Pipers hips may require intervention a little earlier, although this will also continue to be closely monitored. The pleasing thing about this one is the fact that the medical team are prepared to consider performing this surgery, whereas some months ago Piper was considered too high a risk, surgery most certainly not an option. :) 
Full exome sequencing is underway this is self funded research to further understand pipers genetic makeup and hope for a diagnosis.
Once again we remain well aware of the billions of cells in the body and the incredible amount of time and research that must be contributed in the hope to discover these answers. 
Sadly for us everything reflects back to time... 
Although wonderfully for us we wait with a strong happy little girl now smiling through her days and continuing to surprise her medical world.
I can't tell you how wonderful it was to inform pipers specialists ~ 'Last week my husband and I did not witness a seizure' πŸ’œ pipers emergency medication Midaz was not touched! 
We have since witnessed four seizures within twenty four hours, although to us...this remains an unbelievable blessing and remarkable improvement  πŸ˜ŠπŸ’œx
#cantkeepagoodprincessdown  #wegotthis #hopeforpiper #love #strength #kickinggoals 

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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

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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

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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