Freya in the Whitsunday's last year

Freya in the Whitsunday's last year

Wednesday, September 29, 2010

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.

Sunday, September 26, 2010

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

Thursday, September 23, 2010

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).

Tuesday, September 21, 2010

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.

Sunday, September 19, 2010

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".

Wednesday, September 15, 2010

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.

Monday, September 13, 2010

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.

Saturday, September 11, 2010

Getting around

We are getting around the hospital now that Freya can get in and out of her wheelchair with more ease.  She is now able to stand with support and swivel herself into the chair.  The support she needs from us is more for balance, because she takes all her weight herself indicating the return of strength to her left leg and hip.

The number of places to visit within the hospital is pretty limited, but she has made friends with another young girl in the rehab. unit., Beckie.  Beckie and Freya are only a couple of weeks apart in age and have already formed a bond.  Like most of the other children in the rehab. unit Beckie was involved in a serious car accident and sustained head and spinal injuries.  She is doing well, although it is likely to be another 6 weeks or so before the "halo" that is supporting her spine can be removed. There are only about 6 or 7 children in the rehab. unit and all except for Freya and a 9 year old boy (who had a stroke) are victims of rural car accidents.  Talking to these families, we realise how lucky we are to be local to the RCH with a trip home for us taking 15 minutes.  For these families, home is several hours away, and some have not even been home since the time of their accidents weeks or months ago.

Freya's other favourite place to visit is the RCH Children's Garden which is beautifully designed and maintained by Sarah Baldwin's sister Julie.  Julie is an amazing individual and is famous throughout the hospital for her devotion to the garden and getting the kids involved in gardening activities.  We can't wait for the weather to improve so we can spend more time out there with her, her volunteers and the other children.

Friday, September 10, 2010

some sad days

As we were told would occur, Freya has continued to ride the emotional rollercoaster over the last couple of days.  The reality is, that despite pre-surgery counselling, an 11 year old child has limited capacity to understand and rationalise the long term effects of hemispherectomy surgery.  An 11 year old brain operates almost exclusively in the here and now. 
For Freya, the loss of movement in her arm and hand and the loss of her peripheral vision in both eyes are all causing her distress.  She is anxious and easily startled by movement and noises in her periphery that she can no longer see.  Apparently children do adapt to this visual deficit quite quickly, but in the context of her total loss of ability to self-care and function since the surgery, it is understandably an additional reason for sadness.

Thursday, September 9, 2010

The Rasmussen's Encephalitis Children's Project

As I mentioned in my first blog entry, Freya’s hemispherectomy was a last resort after all the available treatements failed to control her Rasmussen’s Encephalitis (RE). For a long time we thought, surely, in the 21st century, there must be a better solution to chronic inflammation than disconnecting half a child’s brain. Unfortunately while there are a few treatments that can help, most do not control the disease in the longer term. Most RE children, like Freya, eventually have a hemispherectomy. Because of the rarity of RE there has not been any significant research into finding a non-surgical cure for this horrible disease.

Our belief that more should be done to find effective treatments for RE has led me and my sister, Deirdre, to become actively involved in the RE Children’s Project. This is a registered American charity that was established earlier this year by Seth Wohlberg. Seth is the father of 12-year old Grace, who had a complicated hemispherectomy for her RE. Seth has amazing initiative and determination, and has committed very significant personal funds, time and energy to organise a conference on RE, to be held in Salt Lake City from 6-8 October this year. Over 50 of the world’s leading neurologists, immunologists and other experts will be attending the conference, which will identify ‘next steps’ for research into RE. Deirdre will travel to the conference in October but it is too early in Freya’s recovery for me to go, as I originally planned.

The RE Children’s Project focuses on raising funds for high priority RE research. There is new evidence than many forms of uncontrollable epilepsy, not just RE, are caused by autoimmune-based inflammation. Therefore, it is hoped that any breakthroughs in treating RE, which is a rare and severe form of autoimmune epilepsy, may help with other more common epilepsies.

The website for the RE Children’s Project is . As an alternative to any gifts for Freya, perhaps you might think about making a small donation to the RE Children’s Project. Details of how to donate are on the website.

Tuesday, September 7, 2010

The hard work begins

Freya is now under the care of the Pediatric Rehabilitation Unit.  We have been given her weekly timetable which includes daily sessions with the physiotherapists, the OT, the speech therapist, the play and music therapists - so many therapists, and all of them lovely young women with endless enthusiasm, patience and kindness.

Freya is still battling a couple of infections but she is much more awake, brighter and beginning to be more like her old self.  She is making (bad) jokes, and being very charming to the nurses by telling each new nurse she sees how much she loves their hair (don't ask me why), but the compliment goes down a treat each time. We are also seeing more of her smile, which at this early stage is very lop-sided as a result of the surgery.  This asymmetry will correct in time with the help of the speech therapitst.

We saw Freya's neurosurgeon Wirginia Maixner yesterday who explained that movement is returning early to Freya's left leg first because the encephalitis had infiltrated the part of her right hemsiphere that controls the left leg some time ago.  This meant that her left hemisphere (now her only functioning hemisphere) was already doing some of the left leg work for it's diseased counterpart.  As the encephaltiis hadn't attacked the areas of the her brain controlling her arm, regaining some arm function will take longer and be a harder challenge.

Monday, September 6, 2010

The GG drops in

Today the Governor General took time from her busy schedule of sitting around waiting to confirm who will be our next Prime Minister to visit the children on the neurology ward of the Royal Children's Hospital.  The response by the kids to the GG and her sizeable entourage was a resounding lack of interest.  In fact, Freya slept through the whole commotion.  Much more interesting however, was a visit later in the morning from Millie the cocker spanial who created much excitement amongst the children. Unfortunately Freya slept through Millie's visit as well (although we do have a very cute photo of Millie on Freya's bed for her to "remember" the visit by).
Freya was due to be transferred to the care of the Pediatric Rehabilitation Unit today, but she is too unwell.  She is nauseous, dizzy, extremely tired and still in a fair amount of pain. We are hoping that she has a better day tomorrow.  On a more positive note, the doctors are so confident that Freya's surgery has stopped all seizure activity in her brain's right hemisphere that they are reducing her anti-epileptic medication immediately (normally, they wait about 6 weeks to be sure all seizure activity has stopped).  First medication to go will be the Topamax, or "Dopey-max" as it is not so affectionately known.  It is powerful anti-epileptic drug, but quite notorious for causing cognitive slowing and mental dullness.  Hoorah!  Good riddance Topamax.

Sunday, September 5, 2010

Father's Day

Freya is beginning to wake properly after Tuesday’s surgery. This morning she asked for food, watched some TV and listened to me read her a story – engaging in lots of commentary as I read. Unfortunately being awake makes her much more aware of her pain, and it is a balance to keep her comfortable without making her too groggy.

Anthony declared this Father’s Day to be the best yet after he asked Freya to see whether she could move her left leg. She then lifted it clear off the bed! We called the nurse to show her Freya’s “trick” – she was so impressed she called one of the neurosurgeons who was on the ward.

Freya’s brain is already beginning to make the new connections necessary for movement to resume in her left side. If she were an adult these new connections would take months, years or quite possibly never be made.

Saturday, September 4, 2010

A quiet saturday

Freya has continued to sleep most of today.  Her sleep cycle seems to be way off - with more wakeful periods during the night than during the day.  Wirginia has described Freya's post-surgery brain as "scrambled" and it will need to take time for her circadian rhythms to reset (hopefully not too long!).  Her brain is also firing off mixed messages about feeling on her left hand side.  Freya says she can feel touch on her arm and leg, even when they are not being touched.  Again, this should settle over the next few days.  Another deficit Freya has suffered as a result of the surgery is permanent loss of peripheral vision in both eyes.  Apparently, children accomodate this loss quite quickly by learning to turn their heads to see what they can no longer see in these visual fields.  It will however, be another major adjustment she will need to make.

If all goes well and she continues to be able to keep up her fluid intake,  the central line will be removed tomorrow.  This will be great, and definitely give Freya more movement in her neck and make her feel more comfortable.

Friday, September 3, 2010

Weeks End

Freya has slept all of today, only half-waking a few times. Although she is less wakeful than yesterday, the doctors are not concerned and have told us to expect days where she will be extremely tired at this early stage.
She also has a urinary tract infection from the catheter making her feel even sicker and more miserable than yesterday.
A small, but exciting sign that movement is already beginning to return to the paralysed side of Freya’s body was when she was able to lift her bottom off the bed. Strength and movement in both hips will be critical to getting her up and walking again.

Wednesday, September 1, 2010

Thursday 2 September

The next few days will be very tough.  While Freya is still sleeping most of the time, she is extremely nauseous and the hospital hasn't yet found a medication that will allow her to keep her anti-epileptic medication down.  The morphine she is receiving to control pain will be contributing to this nausea.

Freya has been on a combination of 4 anti-epileptics drugs for several years, and while the right side of her brain should be no longer capable of producing seizures it is still important that these medications be weaned slowly over a number of months.  Any surgery to the brain can induce new seizures, even from people who do not have epilepsy. As only one of her current medications can be put into her IV line getting her system to tolerate her epilepsy medication is the challenge of the day.

The end of the first day

Freya has continued to sleep most of today, waking only very briefly. She is very nauseous and it is difficult for her to open her eyes due both to the amount of sedation she is receiving and the facial swelling which by tomorrow will have given her 2 very black eyes.
A hemispherectomy is the most radical of all brain surgery. Freya’s traumatized brain will take time to recover over the next few weeks and months.Her left hemisphere will then need to begin the task of taking over many of the functions of her ‘decommissioned’ right hemisphere.  However, some functions will never transfer to the left hemisphere successfully, these will include fine finger movements in her left hand and higher order visual/spatial tasks.