12 years old and doing well

Yesterday Freya picked up her box of watercolour pencils and drew a lovely sketch of a gum tree.  She used various shades of brown and grey to recreate the contours of the branches and bark.  Not a remarkable effort for most girls, but for us it's something we were delighted by.  For one, it is the first time since her surgery she has shown much interest in art - she has not had the concentration or interest to do any drawing, something she previously enjoyed and was very good at. Just as heartening is that the drawing is  further indication that Freya's left hemisphere is reorganising to take over the tasks of her disconnected right hemisphere.  The right hemisphere is responsible for visual and spatial skills and it is generally considered that creativity, visual arts and musical talent are all right hemisphere skills. Unfortunately, there has been no improvement in her singing voice which is just as ordinary as ever - I don't think we can blame the encephalitis or hemispherectomy on this though, given the appalling lack of vocal and muscial talent in her gene pool.

Last Wednesday (Australia Day) was Freya's 12th birthday.  She declared it her best birthday ever.  It was a great day, she was thrilled with her presents and was happy all day. It is wonderful to see the improvement in her mood and a corresponding willingness to try doing things with one hand that she said were "too hard" just a few weeks ago.

2011 - A new and brighter year

Four months has passed since Freya's surgery and a new, and hopefully better year has now begun.  This time 12 months ago we were in the process of requesting approval from the hospital ethics committee to commence Freya on a new drug being trialled in the US for Rasmussen's Encephalitis (RE).  Approval was granted and Freya was provided with the drug over a course of several weeks in January and February.  Because a response to the new treatment can take up to six months, we then had to endure a long wait while we all hoped that a dramatic improvement in Freya would occur - unfortunately this wasn't to be, with Freya continuing to deteroriate over this period. This is one of the many challenges of RE, not only is the course of the disease extremely variable, so too is the response of children to the exisiting arsenal of treatments available.  What is not so variable, is that ultimately most children with RE will need to have a hemispherectomy once the treatments no longer hold the progression of the disease, if they have at all.

Today, as she happily plays the Wii with her cousins, it is hard to believe how far she has progressed in the last four months.  From being barely able to engage in conversation or concentrate for more than a couple of minutes in the early weeks post-surgery, she is now back to doing most of the things she liked to do before her surgery.  She is back into enjoying music, scouring Itunes for her favourite songs and downloading them onto her Ipod.  She has been to the movies many times, she watches her favourite TV programs, music clips on the Ipad, argues with her sister....all the normal activities of the average 11 year old girl.

Of course, she is not quite a normal girl:  She is still learning to adjust to a life with the use of one arm and hand.  While her left arm has a quite a good range of movement it is difficult for her to translate this movement into any real functional use, but both Anthony and I and the OTs will keep encouraging her.  She is not back on her scooter yet (a great form of transport when you have one weak leg) but this is probably more from lack of confidence than lack of ability - we will keep encouraging her on that front too.  Her planning, problem-solving and decision-making skills are also still quite compromised and it may be some time before they are back to pre-surgery levels.

One disappointment has been that we have not been able to stop all of Freya's anti-epileptic medication.  A recent EEG showed that the temporal lobe of her left hemisphere is having some sub-clinical epileptic activity.  Her neurologist is confident that this is a result of the left side of her brain being irritated by the constant seizure activity on the right side in the weeks and months before her surgery, particularly all the seizures that were originating from her right temporal lobe.  He is also confident that this will settle by itself, but in the meantime she will need to stay on one medication to be safe.  Still, she was on five anti-epileptics and she is now only on one - quite a reduction.

Freya will continue returning to the hospital a few times a week during January.  When school resumes in February, her therapy schedule will be reviewed and possibly reduced to one day a week in which all her therapy sessions will be scheduled.  A lot will depend on Freya's level of fatigue, and how she is coping with a return to school.  This is still over a month away - quite a long time in the scheme of things.

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!

home

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.

a discharge date

Following our family meeting with Freya's doctors and therapists on Tuesday a discharge date has been agreed;  Freya will be leaving the Royal Children's Hospital next Friday, the 19th of November - 3 months and 1 week since admission and 2 months and 3 weeks since her surgery.  After such a long stay, the RCH has begun to feel like a second home, and while we're all keen to come home, I know Freya will miss the many nurses, doctors and therapists who have provided her with such support, kindness and encouragement over the last few months.  The hospital umbilical cord will not be severed abruptly though, the discharge plan that we will be given before we leave will include out-patient therapy appointments three times a week for the next couple of months.

In addition to the out-patient therapy we will also be given a rigorous schedule of physio and OT exercises to complete daily at home. As the doctors have explained to us, Freya's brain is currently going through a spurt of activity that is resulting in movement in her left arm, with almost daily improvements over the last week.  It is important that we capitalise on the new connections her left hemisphere is making before this spurt of activity slows down or stops.  The photo is Freya doing one of her physio exercises - putting weight on her left arm (and being kept company by Ella). 

To celebrate Freya's recovery from her surgery and triumph over the devastating epilepsy and encephalitis that has plagued most of her childhood, we are off to Noosa the day after hospital discharge.  A new 5 star resort has opened a couple of months ago, with a lagoon style pool - just the thing for continuing her hydrotherapy program.  The doctors agree it's a great idea too.  Ella doesn't seem to be too devastated by missing out on a week of school so close to the end of the year either.

two triumphs

This weekend has been a good one for Freya, with two terrific milestones being reached.  The first is that it is now 2 months since Freya's hemispherectomy surgery, and 2 months since she has had any form of seizure.  It is hard to imagine that such a short time ago, her brain was so on fire from constant seizure activity that she could hardly walk 50 metres without experiencing a seizure in her leg.  Even in her sleep, she was continually woken by many seizures a night.  Given her surgeon's complete confidence in the success of the surgery, her medication is also being further reduced. Another of Freya's anti-epileptic medications is now being weaned (3 down, and 2 to go) and the plan of her neurologist is that she be medication-free by Christmas.  After years of increasing medications at increasing doses, it's great to be on the reverse cycle.

The second of the weekend events, is that Freya has started to gain a bit of movement in her left arm.  When she concentrates, she can now flex her arm at the elbow. This is exciting as it indicates her brain's left hemisphere is making the necessary new wiring to "talk" to her left arm.  Having the ability to control her arm at the elbow will also have big implications for it's functional use.  It is hoped that eventually she will be able to put her left arm on a table or desk, without having to lift it with the other arm.  The left arm can also become much more of a 'helper' arm if is not just dangling uselessly by her side.  Freya has been worried for sometime about the lack of progress in her arm, so it is really encouraging for her to experience this small amount of movement.

home on the horizon

With the possibility that Freya will be discharged from the RCH in 3-4 weeks, all of her rehabilitation sessions will be directed to getting her ready to come home and function as independently as possible on her return.  We will be having some of her O.T. sessions here at home, so Freya can practice doing things such as making her own breakfast and making her bed by herself in own environment.  (I've been too embarrassed to tell Jane, the O.T. that these were things Freya actually didn't do by herself before the surgery!).

Very important will also be teaching Freya to safely navigate our winding staircase to the upstairs bedrooms.  She is beginning to re-learn the skill of walking up and down stairs in physiotherapy, but it will still be a couple of months before her left ankle is strong and she will be declared safe and steady enough to tackle the staircase at home.

Over the next few weeks, Freya will also be having a range of cognitive tests to establish if there are any particular areas that she will need additional assistance with next year at school.  We are expecting her to be challenged by maths concepts and visual spatial tasks, as these are functions that usually reside in the right brain, and often their transfer to the left brain can take some time.  Last Friday, Miss Sear, Margot Sheridan and the acting principal of Fairfield Primary School,  Anne Morton came to the hospital to meet with Anthony, myselfI and the Rehab. Unit's education co-ordinator to discuss Freya's transition back to school.  Thank you so much Rachael, Anne and Margot for your wonderful concern, support and enthusiasm for Freya's return to school - we are so grateful for all your efforts and ideas.

Freya has been missing school very much, and we really hope she will be well enough to join in some of the fun end of year activities, before returning for the serious stuff in 2011.