Today, on World Cerebral Palsy Day, Lyla is celebrating her first birthday. Lyla was diagnosed with Cerebral Palsy at The Royal Children’s Hospital (RCH) this year. This blog is wrtten by her mum, Cara.
Lyla was seven months old when we took her to see a paediatrician for help with her reflux. During our visit we mentioned that she
seemed like an unhappy baby, wasn’t able to sit up unaided yet and had clenched fists the majority of the time, but we weren’t too concerned – after all she was our second child and we knew that babies all develop at different rates.
We left the paediatrician with medication for Lyla’s reflux, a tentative diagnosis of Cerebral Palsy and referrals to Developmental Medicine, Occupational Therapy and Neurology at the RCH.
The appointment with Developmental Medicine came through so quickly and before our first appointment with our doctor there was still a part of us that thought she would say it wasn’t Cerebral Palsy and that Lyla was perfectly fine, just developing slower than expected. But in reality it wasn’t a shock when we were told that Lyla has Dystonic Quadriplegic Cerebral Palsy.
Lyla has difficulty controlling many of her muscles which means she has trouble grasping objects, is unable to hold herself upright and is unlikely to walk without aids in the future. Initially we struggled with what this meant for Lyla and her future, but our doctor has such a wealth of knowledge about children with Cerebral Palsy and her desire to spend time getting to know Lyla and to see her as a baby first and a baby with cerebral palsy second, has guided us to do the same.
We started regular appointments straight away with Danni Centorame, an Occupational Therapist from Allied Health at the RCH. Danni advised us early on that Lyla needed a Bingo seating system to allow her to sit up without someone holding her and to learn to play independently while not worrying about trying to control her muscles and the rest of her body.
We were shocked that the Bingo seating system costs $11,500, but Danni jumped straight into contacting organisations and the State Wide Equipment Program (SWEP) to raise the money we needed to buy the chair for Lyla. Within weeks Danni had received word that the Freemasons Western Region and the IOOB (International Order of Old Bastards) would join SWEP in paying for the chair. Danni’s passion for the children she works with is evident in everything she does, nothing has ever been too much trouble and her support has been incredible and inspirational.
Shortly after her diagnosis Lyla developed bronchiolitis and was admitted to the RCH for two nights to monitor her breathing. We were blown away by how everyone, from the emergency staff to the ward staff, bent over backwards to make Lyla’s stay as comfortable as possible. The RCH has such a wonderfully positive and happy atmosphere. Even though the children who visit are dealing with such huge challenges the hospital feels like a place to have fun and be kids rather than a sad place for sick children.
Lyla celebrates her first birthday on World Cerebral Palsy Day, 2 October 2013, and over the past few months she has grown into a really happy and sociable baby who loves cuddles, playing with noisy toys, pulling hair and cooing at whoever is lucky enough to be holding her.
We can’t thank everyone at the RCH enough for helping our family through such a difficult time. Lyla has such a bright future and we can’t wait to see what she can achieve. We count our blessings every day that we live in a city that has such an amazing children’s hospital, which is so loved and supported by the community. It truly is a special place.
– Cara