‘Important encounters are planned by the souls long before the bodies see each other” – Paulo Coelho I absolutely believe this to be true, such a beautiful insight. Sending so much love to all the beautiful souls in my life – love that we have all been drawn together to share the journey. Here’s some […]
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 […]
4.30am: Chiara wakes – bring her in bed to re-settle lots of forehead kisses 5.00am: keep pressing the snooze button on the alarm 5.30am: so tempted to press the snooze button again – but get up and meditate/yoga sesh 6.00am: pack for hospital visit (breakfast, snacks, lunch, bottles, clothes, nappies, referral forms, A.F.O’s, boots n’ […]
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 […]
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 […]
Here is a snapshot of a week in the life of Chiara on the IAHP program. Thank you to another IAHP family for sharing their spreadsheet! They have been doing a wonderful job for their son who is unable to walk (yet!). Inspiring to say the least. So far we have been focusing on masking […]
Being a parent of a special needs bub’s comes with monumental changes to practically every aspect of your life. Life takes on an entirely new trajectory faster than you can imagine… Every day a little piece of your heart breaks, as you witness your child’s daily struggle from the time they wake up, to the […]
We were told at the time of Chiara’s MRI findings that the likelihood of Chiara being able to develop speech was very unlikely.. mainly due to the severity of her brain injury as well as the area of the brain that has been injured… in her case the perisylvian area. The term “perisylvian” refers to the area […]
Chiara on the move… you get a taste for her determination in this brief clip. It’s not easy for her to coordinate her body to move, and I’m sure she gets frustrated.. but she has a spark in her eye and strength in her soul.. that will surely take her places in this lifetime.. Big […]
Nothing quite like the force of a full-on flu to bring you horizontal, what a week.. no actually … what a year! I think Maur and I have been running on adrenalin for so long now, we’ve been balancing on the precipice week after week… our days are full with therapies, and our nights seem […]