This morning we set off for the six hour journey back to Melbourne, for our next lot of scheduled appointments.
Today after almost twelve months since trialing a walker, Piper was fitted into her very own!! and although Piper has not been
able to take any steps as yet, knowing the walker may increase this possibility made everybody smile.
Piper once again happy to be standing alongside her big sister, and most pleased and exited by her efforts! A bright little smile
within seconds turned into a most distraught cry, as we quickly unstrapped and removed Piper from the device it was soon evident Pipers new hinged AFO's (leg supports) had been outgrown before given the chance to use, the lovely ladies of Go Kids -Scope provided
Piper with a pair of supportive boots, and once again we tried Piper in her walker, strapped and placed upright! a beaming smile came from our clever girl, a short moment later Piper was again terribly upset and unable to support her own weight.
It's difficult to know where we go from here.
Pipers rapid growth is hardly surprising as the ketogenic diet has certainly caused our little girl to have quite a substantial weight gain, surely the extra gain contributes
to the difficulty to bare weight.
It's just a little disheartening to think twelve months ago the signs were there, Piper was able to use a standing device and tolerate being held in a walker, had we have had the opportunity to build
on those skills at the time Piper may have been strong enough to use her walker, (although really the seizures could have instantly taken that new found ability away!) So there I go contradicting myself :/
Day two it was
again noted Pipers weight gain is becoming something of a concern the PEG feeding and dietary intake appears to be at a volume greater than Piper can handle, although at the nutritional requirements to avoid the adverse effects of the ketogenic diet.
I only hope next weeks discussions with neurologists, dietician and nurses will see a new plan develop.
As far as the PEG tube is concerned it appears to be healing well! which is wonderful news, the procedure to replace
the original PEG with a more compact device (known as a Mic-key button) is a little more detailed than we had first thought, as the end of the tube inside the stomach is quite big, and must be removed as inserted using an endoscope (passing
through the throat and out the mouth) this requiring another anaesthetic and an available place in theatre, although the new device was not inserted today we hope the process to be complete very soon.💜