We're off to a flying start, with multiple trips to Melbourne and our first session with Louise Rothols a practitioner for the Anat Baniel method, a therapy supported by the latest brain plasticity research.
Keeping an open
mind and still a little uncertain of just what to expect we entered a small unit where Louise greeted us and immediately began working with Piper, allowing Piper to guide her and giving only the smallest of assistance, I couldn't help but wonder, is
this actually doing anything?
Piper began the morning with a seizure leaving her tired, we feared our trip to Melbourne along with the opportunity may be wasted.
Watching Piper with Louise it soon became evident this was an enjoyable experience
for Piper and she was wanting to please Louise responding well to the movements and positions. Piper showed the pattern of wanting to side sit obviously this was achieved through assistance, and Piper felt quite pleased with herself being held into a
sitting position. Perhaps by coincidents or perhaps a new small connection was made that day, whatever it may be, Piper with very little core strength is trying to side sit. Obviously her low muscle tone prevents this from happening although the desire
along with the drive and determination is certainly there, so we continue on with fingers crossed x
Piper has enjoyed one day seizure free since the years began, various seizure types although most presenting as apneic tonic clonic, all seizures
are terrible although these have to be the hardest for Piper to recover, they seems to drain every inch of energy leaving Piper extremely floppy and tired. The addition of tears just breaks my heart, coming from a little girl who simply does not cry.
It's almost as if she's more aware now, not wanting the seizure to take hold.
Two busy days at the Royal Children's Hospital, five specialists and a plan in place
Piper has the go ahead for the ketogenic diet, her chances
of success may be slightly less, although this is due to the fact that Piper remains undiagnosed. Statistically determining Pipers rate of success becomes a challenge, best case.. seizure free or a reduction in seizures and or seizure types, this
resulting in further reduction in medication allowing Pipers physical development to increase :)
Worst case.... I guess nil effect and three months wasted. We figure we have nothing to lose.
Piper will soon be rid of her nasogastric tube
replaced by a (PEG) percutaneous endoscopic gastrostomy feeding tube, this is a more permanent solution although can be removed should Piper regain the ability to swallow fluids. As Pipers expected recovery was compared to that of a stab wound, I felt
terrible having to even consider this, although I know this will be of greater benefit to Piper in the long run and certainly more comfortable, no more tubes down Pipers throat, no more skin irritation from tapes and no more having
to reinsert the tube! who knows! perhaps speech may develop!
We now await a date for surgery