December 2014

Goodbye 2014.. welcome 2015 ♥ ♫ ♬

We’ve been playing this song all morning (listen and click here)!! Made me think of us and our new normal with Chiara.. and yes the sun does shine better on the other side… there is always an-‘other side’…. another perspective, another way of looking at the cards you have been dealt in life. And as much as […]

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Thank you!

To all the amazing people who have touched our hearts and at times moved us to tears, with their incredible acts of kindness, love and generosity. Honestly, Mauro and I have been blown away  by the amount of incredible support for Chiara. YOU know who you are and thank you! They say it takes a village to […]

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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 […]

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Let food be thy medicine

It’s all about organic green leafy’s, rainbow coloured veggies, healthy fats, good quality sources of protein & complex carb’s! Friday’s we stock up at Petty’s Orchard in Templestowe (amazing place with amazing people!) then come home unload, wash and chop the veg, continue on with the IAHP program (masking, reading program, tactile, auditory, incline) and in […]

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Do you have 8 minutes to spare?

If so, relax and give yourself the gift of a relaxing meditation below. Loads more to come in the new year –  yay – watch this space! If there is one thing I have learnt from this special needs journey, is the importance of self-care… so that us mum’s, dad’s & carers can re-energise and continue […]

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Progress..

The IAHP Program is going well, yay! We are at our max of 40 masks a day (oxygen enrichment program) and have seen direct results already. Her overall tone has softened, this is especially noticeable given Chiara has Quadriparetic (4 limb affected) Cerebral Palsy. Often her little body is overcome with extreme hyertonia, causing severe stiffness and rigidity. Now her […]

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hello new cast

4am start this morning C wasn’t going back to dreamland in a hurry so we soaked off the cast, packed bags, loaded the car and made our way to the hospital – yes all that took 3 hours! Looks like we’ll be seeing the new year in with the cast on, but things are going […]

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little wings

It’s a sad day in the Polymicrogyria community when a little PMG child looses their battle. Although our PMG babies are spread all around the world, it is still a relatively close community given PMG is so rare. A week or so ago another little PMG baby passed too early, the FB forums were inundated […]

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Community love

On behalf of Chiara, we would like to thank Emerald for her beautiful offer to reach out and help. Emerald (pictured below in the far right corner) along with her two friends, Fiona, Leewa and younger sister Audrey, organised their own fundraiser after reading Chiara’s article in the local newspaper. Emerald went to a lot of effort, hand-making […]

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