Our beautiful Gracie Girl was eager to enter this world when I went in to early labour at 26 weeks, fortunately with the right medication and a few lights and sirens from the ambulance I was rushed to the Royal Women’s Hospital where I leisurely (not) stayed on my back for 6 weeks before our precious girl would be delivered at 32 weeks. It was a no fuss labour, crying immediately and only requiring CPAP for 24 hours. Every day in hospital our girl was kicking goals and after four weeks was discharged with no medical problems.
After a brilliant two weeks at home things started to unravel. Grace started to refuse my milk and was gagging, screaming day and night, and would go stiff as a board (Paul would call her his little planker). When she wasn’t planking Gracie would be overly relaxed and seemed to have no control over her neck muscles causing her head to flop around. We initially put it down to being a premature baby.
Over the following four months we had several visits to our paediatrician which came to no avail until a new prescription formula was recommended. This eased her pain but now we as parents had forgotten how to settle our baby. Under the guidance of a sleep nanny we finally found a technique to soothe our girl.
At around six months of age Paul and I were watching a documentary on TV discussing cerebral palsy, and a beautiful little baby appeared on the screen and her mother describing her daughters’ behaviour, at that point our hearts just sank, we just knew that was our girl.
After receiving the worst case scenarios we were completely devastated and our whole life as we knew it changed in an instant. Gracie has been diagnosed with severe spastic quadriplegia. Her MRI also showed that she has an undeveloped brain with little to no myelination. Only one percent of the population can function normally with this brain abnormality but at this point Gracie Girl is fitting into that small percentage.
Gracie has complex needs but through the remarkable help, empathy and knowledge, the team at kids plus are helping her (and us) beyond our wildest imaginations. Our girl came to Kids Plus as a rag doll and now has vastly improved her core strength and is able to sit for small portions of time unaided. Her ability to communicate has improved remarkable with her now saying words, pointing, and communicating through the use of eye communication book. She is also taking steps aided, up to 31 steps in a row recently.
Clearly with their outstanding experience the Kids Plus Team have provided vital equipment to help Gracie feel independent whilst working on her weaknesses. No doubt some of you have heard her screams throughout her sessions but we get through them and then she will do something amazing and gives us a cheeky but very knowing look!
We are truly blessed to have a foundation that has all the therapies under one roof, staff who have a true passion for what they do – from the CEO, therapists and administration staff, it is a one in a million place to attend who will continually guide us along this tough journey. We are forever grateful. Thank you Kids Plus.