Hope Love Cure

The brutal truth 💜

I guess we asked .. no longer are  we looking for a cure for Piper as for now that lies in the hands of research, we are striving for management.   we do not know the underlying cause and by the sound of all the decoding that needs to go on it would be astounding if we were to decipher anything without a prognosis,  Piper  is certainly not text book as theories continue to come and go, and just when Piper presents In a certain manner typical to a certain syndrome, she'll add something unexpected into the mix, which no longer houses her in that category.

 so once again testing continues, our neurologist is now quite sure what we are looking at is  a degenerative condition, and when asked about speech, ..the answer- "I wouldn't be expecting piper to talk!"
 My heart dropped! and I knew if I looked at my mother right now, we'd both be quite a mess!
Pipers head had also stopped growing, fuelling the suspicion of deterioration.
Piper is experiencing so many seizures at the moment and nights are so incredibly hard, as the seizures  appear more aggressive. We now have less than two months left until the completion of our ketogenic trial,  fearing that some myoclonic  conditions worsen with the ketogenic diet- if this is even a myolonic condition! because honestly, who knows? We still await results for Retts syndrome, although this is one of those conditions that Piper had shown signs of, and then improved in areas of suspicion.  
This was supposed to be our answer! It sounds  ridiculous  I know! Although watching stories as Lorenzo's  oil and reading of life changing improvements to  children who were non responsive to medications, the ketogenic diet then helped to give those children an improved quality of life! improvements of some were astounding! this was supposed to be us! 
It feels as though the neurologist almost expects the information we are giving, as if he knows something we don't! 
Our last appointment was a twelve month routine follow up for scoliosis,   as some time ago Piper had an obvious preference to her left side, it was suggested the muscles were further developed on one side than the other, which with strength and development should in turn sort itself out! Fair to say it was unexpected when the Doctor informed me Piper now has scoliosis! It was also unexpected that from everything I'd been told in the last  two days this should make me cry! The one thing most likely to be fixed!
Piper is now on the waiting list for a plaster jacket, to hopefully correct the curvature in her spine, I'm informed it will not be easy and certainly not for a child unable to stand with a severe seizure disorder, although  I see no alternative,  I don't know how I'm supposed to react with the information I have, I don't know what else I'm supposed to do! I have every hope that one day my little girl will be able to walk, talk, sit up or even hold a spoon, any one of these would be marvellous, however if this isn't possible, if she is reliant on a wheelchair, then I would like her to be able to sit comfortably.
what I do know is Piper's little body may again be losing strength, although her spirit is once again saying, just give me a moment! 
I'm going to get back there! 

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Connie | Reply 14.05.2013 16:36

What a courageous little princess you have Summer! And that is credit to you and her beautiful family that supports her. Praying for you all xxx

Sal | Reply 14.05.2013 15:28

With developments in science, technology & medicine, why not consider there will be a breakthrough? It happens - can happen anywhere at anytime. xxx

Courtney McPhail | Reply 14.05.2013 11:56

Such an amazing and strong little girl who gets these wonderful traits from her family. I think of you all often. Good things come to those who wait xo

Barb | Reply 14.05.2013 11:54

Summer, I remember leaving one child in ICU to have another fitted for the cast and my feeling if devastation. Other issues don't make this any less hard <3

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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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