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!