Therapy, funding, yoga & getting back on my bike…??

So it’s been a busy time in the land of Chiara … we’ve had physio, osteo and another Feldenkrais session this week. We are back at the hospital next week to see Dr. Michael Johnson regarding her clubfoot and general development. Then off to Monash Hospital for an overnight sleep study. Sleep… what is that again?

We also have a gala event coming up at Government House, Mauro, Chiara and I have been invited by the Childrens First Foundation. Sounds fun! They helped fund the gap for her wizz bang seating system. Check out her smiling face in their current newsletter here.

We’re linked in with many Facebook groups in the world of Polymicrogyria, and a few other disability groups, as well as phenomenal health and wellbeing groups tailored at kids with special needs – it’s a great network to keep connected with..

And then there’s funding, joyous funding…which can be over-whelming at times, the admin never ceases to amaze me with this special needs world, it’s endless!! Wading through the labyrinth of funding takes a lot of time and effort & mostly patience…

The financial strain a disability can place on a family is tough, the idea of two incomes is no longer a reality. Therapies have to be carefully considered, and it’s not an overnight fix-situation – so this phase can go on for years..

If money was no option wow I would implement so many therapies… but we are very blessed with what we are able to offer at the moment. Mauro has quit most of his work and is now home to help with therapies for little Chiara…

Here’s a typical day of home program plan:

  • 7am yoga, music, Tibetan bowl, physio
  • 8am inclined floor, physio exercises, masking
  • 9am balance and mobility exercises
  • 10am homo-lateral pattern, inclined floor, masking
  • 11am balance and mobility exercises
  • 12pm homo-lateral pattern, inclined floor, masking
  • 1pm balance and mobility exercises
  • 2pm homo-lateral pattern, inclined floor, masking
  • 3pm balance, mobility and physio exercises,
  • 4pm swim program (in the bath!)
  • 5pm massage

Then we have weekly appointments:

  • Physiotherapy
  • Biodynamic Osteopathy
  • Anat Baniel/Feldenkrais
  • Swimming starting next term
  • Development Program with Noah’s Arc Carer

& the usual Royal Children Appointments with Neurology, Orthotics, Speech Pathology, Developmental Medicine, Paediatrician.

So life is busy and we also have a little red-headed amazing spirit who needs our full loving attention, so today Grace and I set off on bike to take her to kids Yoga.

Bike riding: This is one of my great loves, I have missed jumping on my bike and riding along the bay…. Sunset, sunrise, winter, summer… alone with music playing from my ipod, or riding with some friends to a local bar or cafe … it was a big part of my life before I moved to the tree’s…. the sense of freedom aaahhh.. & I also loved zipping around on my motor bike loads of fun.. .. !

So today, as Grace and I rode to the local café, then to Yoga through the lush green bike trail, I felt that same sense of freedom.. Grace was loving it… telling me to go faster – of course!..
… I know we have many years ahead of hard work, and re-adjusting to a life that has steered off into a very different direction… Chiara has taken us on a magical mystery tour. I have no idea where we are headed, but as long as she gets the optimal start, it’ll all make it worthwhile…


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