Bilateral Perislyvian Polymicrogyria

A miracle milestone!

Wow, three and a half years in the making!   It’s been a long time coming and I cannot tell you how happy this moment made us! Mauro and I have put in a lot of hard work to get to this stage and especially little Chiara! It feels like we have won tatt’s, potential […]

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Nana’s prophecy..

We have been busy in the world of Chiara. The IAHP program is ticking along, we are gathering all the information for the Interim Report which is exciting.  We have also reignited other brain development therapies over the past few weeks, such as NAET sessions, which are wonderfully explained in Kristen Morrisons book ‘Naturally Better […]

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going with the flow

Now that the major festive celebrations  are over it’s time to get back into the rhythm of the IAHP home therapy. It’s like a double-edged sword these days, social outings are awesome but they can sometimes come at a cost. Chiara’s therapy being the main one, and the simple fact it is difficult leaving the house with […]

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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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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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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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IAHP Oxygen Enrichment Program (Masking)

Our main focus on the IAHP program for the first month has been Physiology and Nutrition, we then move into the Physical and Intellectual aspects next month. Chiara’s nutrition has absolutely stepped up a notch, she has the most incredibly heathy diet! It’s so reassuring knowing that she is meeting all her daily nutritional needs, […]

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