Freya in the Whitsunday's last year

Freya in the Whitsunday's last year

Tuesday, December 7, 2010

settling in

After a lovely holiday in Noosa, we are all settling into our post-hospital routine.  This routine revolves around a weekly timetable of daily out-patient appointments at the RCH which can involve only one or two sessions or a full day.  Freya has also been very keen to return to school and participate in as many activities as possible before the end of the school year next Friday.  The rigorous RCH timetable doesn't allow for much school time, but she has managed to spend a couple of hours at school several times over the last week and a half.  In addition to the excitement of seeing all her school friends and teachers again, it has given her mood and confidence a huge kick-start to be doing 'normal' things again.  Thank you so much to Ms Sear and  5/6S for giving her such a heroes welcome.

Freya is also receiving Occupational Therapy at home twice as week as part of a new initiative of the RCH "Hospital in the Home" Program.  The home visits are about encouraging her to use her left arm and hand as "helpers" as much as possible in a practical, everyday way.  Because her left arm and hand ares so weak, and using either takes such effort, is is very easy for children who have had hemispherectomy surgery to simply ignore their weak arm and hand and rely entirely on the stronger ones.  Without constantly thinking about, and  trying to use her weak arm and hand Freya's brain will not make the neuro-connections needed to make them functional, so it can become a cycle of weakness and neglect, something that we would really like to avoid.

This week at the hospital is a busy one:  On Thursday, Freya will receive her first botox injections (young, I know).  The botox is intended to reduce the stiffness in her left calf muscles to give her a more natural gait and also allow her left hand to relax more readily.  I'm sure I won't be the first mother that has argued for a bit of botox to administered in my direction given the all the extra wrinkles she has caused me over the last months (years).  Freya will also be having her first EEG and MRI since the surgery.  Although she appears to be completely seizure-free, the EEG should confirm that there are no sub-clinical seizures occuring in her brain (those that have no obvious or outward presentation).  All fingers crossed.

Here's Freya enjoying the Noosa beach from the safety of her beach towel.  Despite the balmy 27 degree weather she declared both the resort pools (heated) and sea too cold for swimming.  3 months in the airconditioned comfort of the RCH has made her very soft!


  1. Go Freya! I'm keeping this brief after too many unsuccessful attempts to write something on your blog. You are a hero, you really are.

    Keep up the great work Frey, especially with that left arm and hand. It can only get easier darling!

    Love from Auntie Patricia

  2. Dear Freya,
    I am glad you have been able to get to school sometimes. Keep up the hard work with your left arm. Next time you are having botox I am going to come and push you out of the bed so I can get in. I think I could do with some too. You are doing so well, keep up the good work.

    Love Grandma.xxxxx

  3. Hi Frey
    It was great to spend the day with you today. Thanks for being such good company.
    Love from Aunty Deirdre

  4. Freya,
    Soft, I don't think so. After all the work you have put in, I think you deserve to be a bit fussy about water tempperature. Keep up the great work. Your class sounds (to quote Julia) 'awesome'! Enjoy the end of year celebrations and some normality.

  5. sounds great freya!
    i'm missing you so much right now!
    by the way, Tamara says hi!