Freya in the Whitsunday's last year

Freya in the Whitsunday's last year

Friday, November 19, 2010


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.


    Enjoy your holiday away as a family together after such a long, long time. Really looking forward to seeing Freya back at Fairfield Primary School soon. Love Ril and friends.

  2. So glad that you are finally home!! Enjoy your special holiday with the family. Look forward to seeing you back here - Margot

  3. That is so amazing about Freya's walking - already, after such a short time and after she's been through so very much.

    Every time I see Frey I see more and more of her old self and am 100% confident that in time (especially when so little time has passed so far, since the operation) she'll get there.

    You have all my love and patience darling girl!

    Lots of love from Auntie Patricia xxxx

  4. Home will make a world of differnence. Keep her challenged and off the couch. I'm so glad to hear that she is progressing. Keep up the good work.

    Cris Hall
    The Hemi Foundation

  5. Congratulations Freya, on coming so far so quickly. You've done really well and am sure you'll get stronger every day. Hope you and Ella, and your Mum and Dad are enjoying your holiday.

  6. i'm sooooooooooooooooooooooooo happy and i can't wait to see you again!!!!!!!!!!!!!!!!!!!!
    hows your queensland holiday goin?
    <3 <3 <3 <3
    eDiE xoxoxo

  7. Congratulations! Keep plugging away Freya. You are a champ. Grace sends her best. Take a look at Grace on the TV Tab of the website.
    The Wohlberg Family

  8. I am so proud of you Freya and what you,your family and the physio's have achieved with you so far. Keep up the good work. I hope you all had a relaxing and healing holiday.
    Love Grandma. xxx

  9. I am so glad to hear Freya is back home, just in time for the holidays! It is all uphill from here, enjoy the family time all together. all my love from San Francisco :)