RCH visit # I’ve lost count

Back at the hospital today and apart from the car ride – all went smoothly! New mould for the AFO (ankle.foot.orthosis), then downstairs to see Prue & Dr. Johnson for the new cast. Glad we got to see Michael before he dashed into theatre for an op, he’s amazing! Chiara will have the cast on for the next 3 weeks, then her little leg will be cast free! IAHP mobility program here we come! We soaked off the cast just prior to the visit, and enjoyed a few short hours of cast free-dom!

It’s pretty full on managing her little body that is unable to hold itself up, she is becoming bigger and heavier. Changing her clothes requires two people these days, one to hold her upright (otherwise she’ll flip out of your arms) and the other to move the clothes over each limb. Her legs tend to cross over one another and lock, so changing nappies has become another interesting and challenging event. Add the heavy cast on her leg & her strong cerebral palsy tone to the mix and well, the degree of difficulty increases threefold! Yesterday was a testament to that….

“nat bring the wipes, we’ve got a live one here”…. ah you know you’re in strife when a brownish colour (well its more green from all the green’s she eats!) strikes in places you weren’t expecting – all of a sudden you have sh*t on your arm, fingers, Chiara’s leg, her back, hubby’s arm, the toilet rim…. all the while trying to keep Chiara’s new cast poo-free and her body in an upright position as her strong cerebral palsy tone suddenly locks in and her legs cross over. Hilarious, stressful and intense all in one! As the days go by, Chiara is requiring two people minimum to look after her…

The more I notice parents of disabled children at RCH or out into the world, the more I am in complete awe and admiration of their resilience. Unaware to them, I am sending them so much love as they walk by… I would otherwise go up and hug them – but my piscean star-sign would probably leave me in a puddle of tears…

 

1 Comment »

  1. Good news for Chiara that she has three weeks to go then cast free! 😊
    Sending big hugs to you, Mauro, Grace and Chiara OXOXOXOX
    💕💕💕💕

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