Today Freya was discharged from the RCH, just short of 100 days since admission. In this period and the weeks before she was admitted, she has experienced status epilepticus (a life-threatening state of near continuous seizure activity), the most radical of all brain surgery on 31 August, and then following this surgery total paralysis on the left side of her body. In these same 100 days she has also learnt to sit, stand and walk again. It has been a busy few months.
Physically, with the exception of her left arm and hand, she is stronger and fitter than she has been for a long time. She can now walk without experiencing leg seizures and today she was assessed as having 80% of the walking speed and endurance of the average 11 year old girl. Over the last few weeks, we have been regulars at the hospital orthodics department to have her leg orthosis re-adjusted as her left leg muscles have continued to bulk up.
Cognitively, things are improving at a slower pace. By the end of each day (and often for periods during the day) the demands of her physical and cognitive rehabilitation leave her exhausted to the point where even a simple conversation is beyond her capacity. During these periods of cognitive fatigue, she cannot maintain eye contact, follow the thread of a conversation or even respond to questions. As her brain recovers from the surgery and the left hemisphere continues to pick-up the functions of her now defunct right hemisphere, this cognitive fatigue should reduce and Freya will become more like her happy, bright former self.
In light of what her brain has been through over the past five years, we need to be patient and accept that full recovery is going to be a slow process. We are really hoping that now she is home and out of the hospital environment and engaging in more normal interactions with friends, family and neighbours, her cognitive recovery will be given a healthy boost.