Yay! No more casts, finally able to give Chiara regular relaxing baths.. watching her mini legs and feet move freely without the weight of a heavy cast bound to her leg… so the new procedure was to have these new funky (expensive!!) shoes on 23 hours a day! Sure, sounds easy right?
So the boots and bar havnt been working, aside from the fact they are super restrictive… little Chiara seems to do a Houdini every time.. her mini right foot seems to magically slip out! Aside from the fact she was not sleeping so well with them.. at all! Yet another unhappy casting episode this time […]
So I went undercover for a while after the initial diagnosis.. mostly because I spent as much time (in between looking after the girls) researching as much information as I could… I felt a deep sense of urgency, to get Chiara onto a top-shelf nutritional plan, as well as a kick-ass synergistic therapy plan. Problem […]
Polymicrogyira = “Poly” means many, “micro” means very small, and “gyria” is the medical term for the wrinkles in the brain. So we have “many very small wrinkles in the brain”. During the baby’s development in the uterus the nerve cells divide and make up the layers of the brain and make the wrinkles (gyri) of the […]
Here we are back at the RCH, but today has nothing to do with Chiara’s clubfoot. So as we learned part of this new Polymicrogyria mystery.. it comes with a very high chance of seizures. So we are booked in urgently to the EEG department for more tests. Mum came along with me for this test […]
It’s interesting this life.. the people we meet, the timing of events and the way we receive, assimilate and respond to a variety of life events that come our way. Looking back, I always knew in some shape or for, something like this would take place in my motherhood years. Somewhere deep down in the […]
The phone rang in between nappy change.. Grace wanting her toy….. and Chiara needing all of my attention for the task at hand. But I felt a deep sense of urgency to answer the call. “Natalie, the genetic team have asked if you can come in today, we have the results for Chiara. Is your […]
So I’ve stopped counting and accepted that this is our norm.. that our days off as a family are mostly spent at the hospital with specialists helping to unlock the key to Chiara’s mysteries.. that we will continue to visit this place of healing and discovery and come what may… The RCH sent me a list […]