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LoveQuilts Australia - Cassian's quilt

Cassian's quilt   (Quilt Coming Soon)

Born:April 2020
Illness: GMFCS 5 quadriplegic Cerebral Palsy

Theme: Wild Woodland Animals


Quilt will open soon, keep checking back!
Photo of Cassian

Theme details

Wild Woodland Animals - Including foxes, bunnies, bears, squirrels, owls, deer



Child Interests

Cassian loves animals! Most of his favourite shows feature animals and he loves to laugh at us making animal noises. Before his accident, he was very much into nature and being outside and even now we still go on nature walks with him after the accident. He loves flowers, leaves, sticks, rocks, mushrooms and anything tactile which engages his senses. He also loves dinosaurs and music. We have always played classical music for him at night as part of his nightly routine which he loves and which soothes him almost instantly.

His room is decorated in a woodland/forest theme to match some teddies he has had since birth and which have comforted him throughout his recovery.

He seems to prefer muted, earthy tones and doesn’t really have a favourite colour that I know of, but he does gravitate towards more soothing tones as opposed to bright tones. I think it reminds of being outside, which is his absolute favourite place to be :)


Biography

Cassian was born big and healthy after an uneventful pregnancy and birth. Unfortunately, at age 18 months Cassian suffered a drowning accident on 22/10/2021 where he went into cardiac arrest and had no heartbeat for approximately 45 minutes before being resuscitated and admitted to paediatric intensive care in an induced coma. On Monday the 25th Oct, we were told that he had gone too long without oxygen and that his injuries were most likely not survivable. We had Cassian baptised that night and received information about donating his organs before they reduced his coma medications to see if he would awake from the coma or would be brain dead.

The next morning, Cassian was moving his legs and opening his eyes for brief moments. At that time we were told he was not brain dead, however his survival was still not guaranteed as they were not sure he would be able to breathe independently without the ventilator and we had to decide whether to re-intubate him if it failed or make him comfortable and let nature take its course. He was extubated on the 28 October (6 days after the accident) and he had no issues whatsoever and was breathing almost immediately. Ever since, he has maintained his oxygen levels at between 95-100%.

Overall, Cassian spent around 8 weeks in hospital before being discharged. When he was discharged, he was in what they call a “minimally conscious state” where he lacked awareness of his surroundings and we were worried he would be in this state forever. Some people who suffer severe hypoxic brain injury move through this state as they recover and others stop recovery at this stage and never improve from this. We did not know what Cassian would do. He went for so long without oxygen they we knew his brain was severely damaged.

Thankfully, most likely due to neuroplasticity and the excellent care he received at the Adelaide womens and childrens hospital he did have further recovery, particularly cognitively and we now see lots of glimpses of the old Cassian. He recognises people, his eyes track, he cries and laughs and enjoys life. He can demand kisses and is cheeky and sneaky at times. It’s been a slow but steady process. He hasn’t recovered as much physically as he has cognitively, however as he cannot walk, crawl, sit, roll over or even hold his head up. Cassian developed severe spasticity in all four limbs and dystonic movements which is a huge challenge for him. He cannot eat orally due to an unsafe swallow and hypotonia in his core. He has epilepsy, which is thankfully well controlled with medications.

He was diagnosed with GMFCS 5 Cerebral Palsy in February as a result of the severe damage to his developing brain and we know that he will likely be severely disabled for the rest of his life, but we are grateful he is alive. He has physiotherapy, occupational therapy, speech therapy and hydrotherapy on a weekly basis, wears both hand and foot orthotics and is on 5 different medications.

Our lives revolve around Cassian’s care, but we wouldn’t have it any other way. Like most parents, we are so very proud of him and I’ll talk about him to anyone who listens.