new challenges

This week the occupational therapists have begun working with Freya to equip her with the skills to manage with the use of only one functional hand.  While it is hoped that Freya may regain some limited movement in her left hand, this hand will never recover to the point where there is any of the fine finger movement required for functional use.  At best, she may develop the ability to create a loose grip, but even this is not guaranteed.  From now on she will need to learn how to shower, dress, feed herself and perform all school-related tasks with the use of only her right hand.

While watching her struggling attempts in therapy to put on a t-shirt, cardigan or shoes with one hand (and a limp left arm) is it very difficult not to jump in and help her out.  This of course would not be very helpful in the longer term, as Freya needs to be able to function in daily life independently without our constant assistance.  Still, it's hard not to be effected by how frustrated and fed-up she is by the amount of effort now needed to do the small things we all take for granted.

our first outing

Today we all left the hospital for the first time since Freya's surgery.  She is quickly getting over her flu and the doctors said that provided Freya covered her mouth and nose with a face mask whilst leaving the hospital we could take her out for a short time.  Her destination of choice was pizza in Carlton.  I've attached some photos of us making our escape and our 'parole'  lunch.  Freya will be re-tested on Wednesday for influenza and if the test is negative, she will be able to move around the hospital again.

I've also attached a photo of Freya in her helmet that she was fitted for on Friday.  The helmet became necessary following a couple of not-so clever incidents where she thought she could stand by herself.  As both incidents occured during the night, she must wear the helmet during the night and anytime she is not supervised.  The helmet will protect her fragile skull and brain from any potential fall during this critical recovery period.  As you can see by the expression on her face, she is rethinking the wisdom of her nocturnal hijinks.

 leaving the hospital

pizza tastes so much better in the sunshine

mmm...maybe I won't try out any of my tricks by myself again

pressing the pause button

After developing a high temperature yesterday morning, the doctors ordered a nasal swap to test Freya for potential viruses and unfortunately the swab tested positive to Influenza A.  We are not sure where she managed to catch it, as we have been fanatical about handwashing, she is in a private room and I can't think of anyone she has been in contact with who was ill.  We are told that September is the peak flu season in Melbourne and this is evidenced by every spare bed on the neurology and rehab. floor now being occupied by children from the Children's Cancer Centre on the 6th floor.  It is not safe for these patients to to be accommodated with other immunosuppressed children receiving cancer treatment.

I have never considered the 8th floor of the hospital to be a particularly cheery place, but now with the arrival of these little children from the Cancer Centre, all sadly alike with their bald heads, white skin and nasal gastric tubes, I realise there is definitely worse places we could be.

Freya's flu means we have to press the pause button on all her rehabilitation sessions until she is well again.  Like anyone with the flu she is feverish, aching, tired and miserable.  This is a pity as tomorrow in physio we were due to learn how to tranfer Freya into our car - our ticket to freedom (at least for short periods at weekends).

3 weeks on

Today is 3 weeks since Freya's radical brain surgery.  In these 21 days it has been incredible to see the physical process of her recovery.  Everyday she is amazing us with progress that we did not expect to see for several weeks.  Yesterday in physio she stood unassisted from a sitting position, not using her right hand for support.  Today she can do this with ease.  With the support of the therapist she also walked about 3 metres.  Tomorow she will be casted for an AFO which is an ankle and foot orthosis - a moulded plastic brace that will support her weak left leg during it's recovery.  The physio has asked that the AFO be made "urgently" (probably about 2 weeks) as it is now clear that she will be ready for walking weeks before the therapists had anticipated.

The photos I've attached are already a bit dated.  The first is of Freya and Ella about 8 days post surgery and the other is of Freya sitting unsupported for the first time (and feeling very pleased).  Freya's lop-sided smile is typical after hemispherectomy surgery and usually resolves within 6 months.

an overstimulated brain

On the recommendation of Freya's neurologists, we have had a very quiet weekend.  After a week of her sleeping very badly at night, the doctors have declared that her left hemisphere is "over-stimulated" and struggling to cope with all the extra connections it is needing to make to take over the tasks of her non-functioning right hemisphere.  Her left hemisphere is firing and not letting her calm and settle enough to get a good night's sleep, despite medication.  Even activities such as watching TV, listening to music or books were not recommended this weekend, as her brain needs the necessary down time to allow the rewiring to occur.  Unfortunately, this means we will be putting off visitors for a little while longer too. In itself, the  stimulation of the OT and physio is enormous at this early post surgery stage.

On another note, one of the right brain functions that we were told does not always transfer well from the right to the left hemisphere is facial recognition.  Some children who have had a right hemipherectomy will always struggle to recognise unfamiliar faces and have to develop compensating strategies to remember people they do not see regularly.  It is already clear that Freya's left hemisphere has no such problems - despite a rotating roster of about 20 or more nurses, Freya remembers the names of all of them.  When Anthony asked her whether she recognised them by their voices or their faces, she replied "their faces of course".

a goal scored!

Despite our scepticism that she was way off being able to sit independently, Freya can now sit by herself without support.  She cannot do it for too long, but yesterday she sat cross-legged on her bed playing with her ipad for at least 15 minutes.  In her wheelchair she no longer slumps to the side, but is able to stay upright without the support of pillows.  Her brain's left hemisphere is rewiring itself to make the necessary connections to her left side to give her neck, shoulder and trunk the necessary strength and balance to achieve this important milestone.  We have taken some photos that I will include in my next post.

a few goals

Today we had a meeting with the staff of the Rehab. Unit to discuss Freya's progress and map out some goals for her in-patient stay.  This meeting will occur every Tuesday morning and will be an opportunity for all those from the unit who are involved in Freya's care to come together to talk with Anthony and I about how she is tracking.  The short-term physical goals the OTs and PTs have set for Freya are to be:
1.  Sitting independently by the end of this week
2.  Standing with support by the end of next week
3.  Taking a few steps with support by the end of the following week.

From where we are now these seem like pretty ambitious goals, but we are assured by the team that they are achievable.  While Freya has agreed to sign up to the plan in principle, the difficult part will definitely be maintaining her motivation.  For all those who know Freya well, you will know that perseverance is not a quality she is over-familiar with, and unfortunately, there is no easy path on this trip.
Thank you to everyone for your encouraging and supportive blogs. (and I'm sorry that the mechanics has been such a pain for so many), now that Freya is much more alert and bright she loves being read the messages.