Today I lie next to my baby girl and wonder when life became so complicated, after discussions with our speech therapist I can't help but wonder if Piper will ever be able to communicate, I'm so grateful for her smiles, although I really want more!
I just want to hear something, to know we're back on track, I want to hear chatter and giggles from the toy room between our girls..and I do not want to feel so completely selfish for wanting this. I guess it's fair to say I'm having one of those days!
The new plan is to perhaps introduce means of communication, as piper is now 2... I feel my body cringe every time I hear this.. Piper is now 2! She should be...... We now need to...... It feels as though we are waiting, just to see what happens
as time slips away, now I know some things can only be explained with time and development, although I can't help feeling helpless.
Piper has little control of her hands although able to grasp a toy she is unable to control particular
movements, therefore the use of sign language or even iPad communication seems unlikely, there is so much this little girls eyes will say although so much more I want to know.
Where to from here?
Onwards and upwards
The metabolic team will remove a skin sample from Piper at the time of her PEG operation, this they will use as required for further testing.
Gene testing continues in Boston through Monash, and we like many others continue
to hope for a cure.
Piper will be heading back to the Royal Children's shortly to begin the ketogenic diet, Pipers blood ketone and blood sugar levels will be monitored daily and radiological testing will also take place during
her stay. We are extremely anxious to get started and pray this may give our little princess the break she so deserves.