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November/December 2009
Zoe's 4! We had a little backyard barbecue with the Circle of Support
group to celebrate the day, as well as a few of the people who are so
important in
Zoe's life and have made such a difference to her days - her teachers.
Even though she didn't comprehend it was her birthday, she had loads of
fun and was quite at home with the crowd - very unlike the year before,
when she stayed away from most of the guests.
Many have commented on how well Zoe is doing socially. These days, she shows little anxiety meeting new therapists. And, when we had an overseas visitor stay with us for
two weeks, she allowed Kim to read to her - something we've never quite
accomplished!
We started work with two therapists in November. One was with an
Occupational Therapist through an Autism centre, and the other with a
Feldenkrais practioner who is also an Occupational Therapist. Jane has
a very challenging task in front of her as she will need to gain Zoe's
trust enough to physically handle her!
 We suppose, as part of her development, Zoe has been putting us through a testing phase of high-pitched
screaming for anything (and nothing), and getting into EVERYTHING! We
hope this is a phase...even though it's been going on since our last
update!
Her "testiness" could be partly due to summer. Zoe does not take to heat and humidity very well. She never has!
So to counter that, Mitch has been taking her swimming whenever and
wherever he can. Zoe was very very cautious the first few dips (unlike
last summer, when she had absolutely no fear of water), taking up to 30
minutes before dipping her toes in the pool. On Christmas Day, Mitch
put her in a swim vest, and while she enjoyed it, she was still
rather tentative, not letting go of dad or the edge of the pool. It
seemed to take her a while to process that experience because she
headed straight into the pool the next chance she got, and was
absolutely independent floating and kicking around the deep pool in her
swim vest! Take a look here!
Zoe is certainly her father's daughter in her love for water, and
the ocean. She loves trying to step on incoming waves, and has no
concept of danger, making it a real challenge to keep her safe on the
beach!
 Well, to
cap off the year, we've decided to include a little summary of her
abilities like we used to have in our monthly updates.
Gross motor: Climbs well, (improving depth perception)
Fine motor: Getting better with using her fingers (e.g. grasping utensils, crayons)
Communication: no discernible words as yet, but makes herself understood through gestures
Cognitive:
her visual processing, memory, and problem-solving skills are
maturing (we are unsure if her inability to perform some tasks is
attitudinal or cognitive)
Self-help:
drinks from an open cup without spilling, pours, learning to pick food
up with a fork and cut with a knife (she has the motion but not the
strength yet), wants to learn how to put her pants, socks and shoes on
Social: starting to play with (rather than alongside) other children, very comfortable with most adults/unfamiliar faces
Next targets: walk with less rigidity (knee joints), jump, some words???, toilet training???
Happy holidays everyone, and have a great start to 2010!
back to top
September/October 2009
The
last two months have been of researching, phone calls, emailing, phone
calls, paperwork, and more phone calls.
Zoe had the last of the winter bugs by early October, and so we
settled down to taking stock of the services and therapies we'd been
meaning to research and/or gain access to, but hadn't had the time or
energy.
After seemingly endless redtape and confusion, we've had some success. We are now in the books for emergency respite,
but not the ongoing one. The wait might be another 12 months!
 On
the positive side, our application for some funding (through
the federal government's Helping Children with Autism program)
came through
and we can now access some funds for Zoe's occupational therapy. While
the funds are, of course, capped and available only until she is 6
years of age, it is nonetheless welcomed as it frees us to pursue
private speech and physical therapy, and other less conventional ones.
For instance, we are looking into a variation of the Feldenkrais Method
to try to improve Zoe's physical abilities, and alternative nutritional
supplements.
As for Zoe, now that she's rid of the bugs, she seems to be putting her
growth into her height. She is almost growing taller before our eyes
and is into EVERYTHING that isn't beyond her arms' reach!
July/August 2009
It's
been a rough winter. Zoe did not enjoy a day without a cough or a
runny nose. And needless to say, being the cuddly girl she
is, we've had bouts of colds and coughs too! Thankfully, with
the last week of winter we've cleared out the last
of the bugs. Hopefully!
As Zoe recovered towards the second half of August, we noticed
some changes in her which we cannot say for certain if it was
just
because she was feeling better; or if it's part of a development
"spurt".
Apart from shooting up to over a metre tall, Zoe is certainly
more engaged now. She interacts with adults and
children alike much more consistently, her focus  and attention is much
better, and her actions a
bit more purposeful. For example,
if she sees a food on the kitchen counter she wants, she goes to her
drawer (we've got a couple dedicated to her utensils) to get a spoon/fork/knife, whichever
appropriate. She's also started carrying her plate to a table to eat
- a
behaviour we think she's
learned from both schools.
Or she will now always return uneaten
portions of her
food to a plate/bench, as opposed to dropping them wherever
she
was!
It is definitely encouraging to see some progress, even if she is not
yet attempting to talk.
Mitch has been doing a lot of research into therapies that may help
boost her neurodevelopment. We have found a couple of
promising
ones, but will first have to figure out how to get over some hurdles -
e.g. getting an EEG done, time, finances, logistics (as one
is in India and the other in the US!), etc. We are both pretty tired,
but we are not giving up!
Zoe's smiles and happy disposition certainly boost our strength and energy. Teachers at both
schools have commented on how much happier she is now than earlier this
year. In fact, she
loves school so much she hasn't had a bad day for months now! We've
been really lucky to have wonderful teachers, both at the SEDU and at
Montessori,
who have not only used their creativity to motivate Zoe, but given her
the love and attention she needed to gain the confidence she has.
May/June 2009
First and foremost, thank
you to all of you who sent well-wishes,  prayers
and energy for Mitch's speedy recovery. Thank you too to those who were
so quick to offer help and support. We really felt your friendship and
support.
As for
Zoe, the last two months  haven't been good ones for
her, healthwise.
She has been ill continually the last five weeks with some virus or
another. It began with a cold that started to fade after two days but
only to rear up as what doctors thought was tonsilitis later that week.
As Zoe does NOT like being in doctors' rooms or emergency wards, none
of the numerous doctors she saw diagnosed it as hand, foot and mouth
disease, which we realised it was
when I caught it
myself...
Zoe's now skinnier than ever as she lost a fair bit
of weight from the days
she could not swallow even fluids, and the many nights of disturbed
sleep. It hasn't, however, stopped her from growing taller in that time
though!
In spite of the
persistent chesty cough and snotty nose, Zoe
is still her happy self. She enjoys both
the schools she goes to,
and now gets edgey on weekends - wanting to get out of the house by
late morning. She drags one of us to the garage, demands to be picked
up to push the button to open the door and then lunges towards the
car... Excellent communication without words!
March/April
2009
These
two months have been quite eventful. Not only did the grandparents from
Singapore visit for six weeks, but Mitch landed in hospital for almost
two. He suffered some bad burns whilst trying to clear weeds in our
garden one Sunday afternoon. His 12 days away from home saw some mixed
reactions/outcomes. Obviously, Zoe missed him a lot, but after 48 hours
settled into a new routine and new behaviours.
 To
help me cope and to keep Zoe in a routine, we (teachers included)
decided that she would be better occupied going to Montessori
for
a third morning. Zoe certainly did not mind. We don't think it
was
a difficult choice for her anyway - pottering around the house with
mom? Or going to a place where there are lovely
playmates, lots of activities, and a huge playground with chickens and
guinea pigs?!
Zoe so loves being at
"school" these days, that she now goes every morning! A great
transition for us parents too!
Our friends who had not seen Zoe for a few weeks noticed a real difference in
her this month. She is more curious, more sociable, smiles more with
others (i.e. apart from us), and has slightly longer attention span and
better focus.
As for her gross motor skills, her gait has improved (feet closer
together) and is more stable on uneven surfaces. She also LOVES
climbing.
January/February 2009
January
was spent mainly settling back into a routine again after the Christmas
holidays. Zoe had a couple of birthday parties to attend, so that was
lovely for us all! It was also a time for Zoe to have a bit of
a
break from
therapy.
While she did start at Montessori on the third week of January, it is
still a getting-used-to-it phase. It is getting better as Zoe now keeps
herself engaged in the environment for up to 2 hours without Mitch's
presence in the room.
We think this progress can be partially attributed to her time at
the Early Development "classes" she's been attending
two
mornings a week since mid-February. Zoe loves her teachers there and
because there are (for
now) only
two of them (children) there to two teachers, she gets lots of
attention and less of a sensory overload - quieter and calmer
environment.
Friends who have seen her a few times over these last two months have
too noticed that Zoe is "maturing". She is more sociable, can focus and
"attend" (speechie talk!) better, and is definitely more curious and
adventurous. In the photo this month, you see her snuggling up to a
rocking cat called Tabitha. We've had this cat for two years and up
till early this month, Zoe's been petrified of it (Little wonder as it
does look quite horrific from the front!). Then one day, out of the
blue, she decided that Tabitha was safe to approach and got me to help
her onto it. The day after that, she got on Tabitha herself and has
never looked back. Now, Tabitha is the pet Zoe
never had.
In this time, she's also started to love see saws and going down the
slide (again), and pushing herself around on her scooter - an activity
we knew she could do (because she did it once more than a year ago and
never again), but didn't realise how well she could do it! We wonder
how much more talent/skills she's keeping under wraps!
Zoe's Circle of Support also met for a barbecue on 14 February. Not
everyone could attend, so it was more of a semi-Circle... Still it was
great to get together and for Zoe to learn that they are significant
people in her life.
December 2008
We
had
our first long holiday since Zoe was born, and it was a great change of
scenery (Note: We are not saying it was relaxing!). Our apprehension
taking Zoe on a plane was unfounded as she handled it like an old hand.
She did spend all the flights on dad's lap, rather than on her own paid
seat, though!
Tasmania's cool (and at times cold) weather suited Zoe just fine.
She really enjoyed the car rides, checking out new
accommodation/beds, the new experiences, and, of course, having both
parents to herself all the 13 days!
No doubt she also enjoyed time out from her therapies as much as we did.
It became noticeable this month that Zoe would benefit from
having
peer company. As such, we will be trialling her at a local Montessori
kindergarten in January. We feel that Montessori's child-directed
learning method would be really suitable for Zoe at this point. It will
be two mornings a weeek and we hope that the modelling from other
children will encourage her to use her voice more, and improve her
motor and social skills.
November 2008
Zoe
officially turned three this month and we took the opportunity
to celebrate
her birthday with a special group of people in her life.
Zoe's Circle of Support
met for the first time. It was a fitting occasion to meet as
these
are the people who have so graciously consented to being
Zoe's second circle - her community, her "family".
As time goes by, we hope that Zoe will be as familiar with them as she
is with her immediate family. It was a good sign that Zoe was very at
ease with having so many people in her home, and so much going on. In
fact, from the second half of the month, Zoe began showing
much
less anxiety in new environments and/or in large social groups. We have
yet to ascertain if this was due to being on a dairy-free diet, or if
it is simply a stage of development.
Very significantly, Zoe has gone back to being able to fall asleep on
her own again! A very welcomed move that enables us to have dinner at a
reasonable hour, and have time to eat/work/rest when she takes her
daytime nap! (Since the beginning of this year, one of us has had to
lie with her till she fell asleep and be present when she woke!)
 In the last week of the
month, she has also been more responsive and her ability to attend
(i.e. focus on one task for longer periods) has improved.
We finally got to see the
Developmental Paediatrician at the Mater
recently and were heartened to hear him say that we were on the right
track - focusing on Zoe's emotional security and social connection.
This has been a point of contention as we battle with services as to
how far we push Zoe during therapy/sessions.
Although Zoe was supposed to start Kindy (two mornings of kindergarten
without us being present) after her birthday, we have negotiated with
the her teacher at the Special
Education Development Unit to defer the move till
next year, or till when she is ready.
October 2008
October
saw some retracing of steps.
After consulting, Natalie (who we hadn't seen in about 10 months) and a
new therapist, we were given exercises to  improve Zoe's muscle
strength, co-ordination, sensory awareness. This includes getting Zoe
to crawl – you can imagine what a
challenge it is to encourage a child who can walk to go back
to crawling! Others
include putting weights around her ankles to help increase her
awareness of her feet/legs, swinging and spinning her, etc.
We also saw a dietitian who specialises in kids with Down's Syndrome
and austism, and were told to put Zoe on a casein-free diet for four
weeks and then re-introduce it for one, to see if casein has an impact
on her lack of speech. Zoe is already on a gluten-free diet.
For need of a change of scenery/routine, we took our first family
holiday in almost 2 years. It was also a good chance to give Zoe a
break from therapy. Zoe had a bad experience during one
therapy
session and developed an intense reaction to all things looking vaguely
like therapy thereafter –
including her special needs playgroup, and her new speech pathologist
who she really liked the first two sessions! The hope was that she
would forget about that experience and have that replaced by lots of
positve and loving/caring experiences instead. Happily, that worked
quite well!
September 2008
 Another month has whizzed by
in a blurr.
The
tale of Zoe's vision continues. We saw the contact lens specialist, and
he attempted to insert a lens in her right eye (with Mitch holding
Zoe's arms down, and me holding her head still), but gave up after one
attempt. Zoe squeezed her eyelids so tightly that the specialist said
there was no way he could fight the strongest muscle in her body. I
have since made
several attempts at inserting the lens when she was fast asleep, but
have had no luck. With 15 years of handling contact lenses for myself,
I thought I'd have a better chance, but because the opening of her eyes
are so small, I haven't been able to slide the lens in. I will have to
keep attempting, as the only other option left is hard lenses, which is
not only harder to tolerate, but would require Zoe go under general
anaesthetic AGAIN to have it
measured/fitted.
In terms of therapy, there
was not as much to be had as services were
closed for the school holidays. The issue of the irregularity (not to
mentioned the infrequency) of services is a sore point! We have,
however, finally had some response from a couple of private
speech therapists, so we are hoping
that at least one of them will be a good
fit for Zoe's needs. More on that next month.
We
completed
another 10 hours of HBOT this month. Zoe is now a old hand at it,
letting us put the mask over her face whilst she's awake, and even
holding on to the tubing! We will now wait to see if there are lasting
positive outcomes from these 50 hours of treatment before we consider
any further treatments.
August 2008
It's
been about six weeks since the last update – so much has
happened in that time that I am even having trouble recalling it all.
To start with, we have completed the 40 hours of hyperbaric oxygen
therapy. Zoe tolerated being in the chamber (which is about the size of
a figher-jet cockpit) and adjusted to the
pressurisation/depressurisation extremely well. However, we could
only get the
mask on her when she fell asleep, which meant that Zoe did not always
get the benefit of directly breathing in 100% oxygen.
At
the 32-hour mark, we saw some very slight changes, but they did not
last. This was very disconcerting, but we had to persist as we were
told that the effects (if any) would take place after 40 hours of
treatment.
At about the 38-hour mark, we noticed some small/new developments
independently, but did not share it with one another as we did not want
to get our hopes up! To our surprise, these new developments persisted
four days after the treatment finished, and seem to be here to stay.
One
change is her sleep. Zoe sleeps much better now both night and day. She
seems to be much calmer in her sleep, and so wakes more rested and
energised.
Zoe also seems to be much
with "with it" now –
she responds and interacts more appropriately
and more consistently. She
follows routines better, is more focussed and has a slightly better
attention span. It is difficult to describe the changes vividly as they
are quite subtle yet distinct. Indeed, these changes may
be negligible to most parents, it is certainly not to us!
Although we cannot be 100%
sure that they are the result of the HBOT (we are, afterall, trying something yet
unproven for Zoe's condition),
to attribute the changes in Zoe in the two weeks to normal child
development would too much of a coincidence. Furthermore, anecdotal
accounts from parents we met at the clinic suggest that the changes
take effect only about a month after treatment, so we are waiting in
hope.
Being a "new" science, we have not been able to get a clear consensus
as whether Zoe would benefit from 40 hours or 40 treatments. As we did
2-hour treatments initially, and then switched to another protocol
(which saw us doing two 1-hour treatments with
a 3-to-4 hour
break inbetween), Zoe has only had 27 treatments. As such, we will most
likely do another block of treatments next month.
 Zoe has also passed
her annual hearing
test with flying colours. However, the audiologist was unable
to test each
ear independently as that would have required Zoe's face being
touched!!
As
for her vision, we are still seeing specialists about the
merits/dangers of contact lenses as Zoe will NOT tolerate
glasses. If
we do go ahead with contact lenses, the next challenges would be
getting them in/off her, and keeping her from rubbing her eyes!
Whilst we were in Brisbane doing the HBOT treatment, we sought to have
Zoe's speech assessed. As she is pre-verbal, much of the information
came from us and from the speech pathologist watching her
play/interact. It came as no surprise that she was assessed as having
severe receptive and expressive language difficulties (Preschool
Language Scale-Fourth Edition), but that the delay appears to be inline
with her overall development.
As such, at this stage, it is still the big unknown when it comes to
Zoe's speech. It is too early to suspect or rule out Childhood Apraxia
of Speech as Zoe will first need to be able to imitate; and so we can
only pray and hope that her speech will develop as she develops her
other gross and fine motor skills.
As for her walking, it
has improved (she is still unsteady but falls
less) and she has started to walk up/down steps holding
on to the
rails/banisters (as opposed to crawling up/down them).
Zoe has also "shot up" in the
last few weeks. Everyone whose seen her in the last week says that. We
haven't measured her, but her pants that needed to be folded
up a
couple of inches at the start of winter are now just right for her!
Finally, on a lighter note,
we
managed to catch up with a friend of mine who I hadn't seen for at
least six years. Thupten Khedup is a Tibetan monk I met at the Woodford
Folk Festival back in 2000. We've kept in touch in
spite of
his moving back to India and around Asia, and we finally
met up in
Brisbane last week. When (through proper translation) Khedup-la learned
of Zoe's  condition, he
immediately offered prayers
and blessings. So
our little girl was enveloped with the incence blessed by the
Dalai Lama, and now wears a little pouch to protect her
always.
Uncannily, we also learned that Zoe's way of kissing
(with her forehead, not her lips) is a Tibetan practice! Go figure!
June/July 2008
We
combined our updates for these two months as we had (and have) only one
major focus/issue at the moment.
Zoe's
blood
test results returned with unexpected news which hit us hard –
she has a chromosomal abnormality. It is such a rare form that there is
no real name for it. She has a partial Trisomy of Chromosome 15. In
other words, three copies of part of chromosome 15 instead of the
normal two (p terminus to q15 for those who know
the
science.)
 We learned of
this news in mid-June but did not tell many people as we were waiting
to get more information when we saw the geneticist in early July. We
have since seen the geneticist and are little wiser. In fact, our own
research has yielded more clues/information. Please see the Diagnosis
link we have created for more details on Zoe's condition.
As you can
imagine, we are still coming to terms with this new development. While
we will step up Zoe's therapies (according to the areas that are likely
to present most challenges), we will endeavour to focus only on the
present, and not the prognosis.
One
step we have taken is a successful trial hyperbaric oxygen
therapy session in Brisbane.
This form of treatment is used a lot in the USA and Europe to assist
children's neurological development when it is compromised by a wide
range of conditions. We are planning a total of 40 hours in the chamber
if it continues to go well.
We
are also
investigating the use of contact lenses for Zoe to prevent her from
developing a lazy eye as we don't think it will be possible, for the
next few years, to get her to consistently (if at all) tolerate wearing
glasses.
We
will seek
whatever support we can find/get,
and help Zoe beat any odds and
realise her full potential. All that, with lots of love.
May 2008
Zoe
finally had
her eyes checked (under general anaesthetic) late this month. Although
we'd been warned before that she'd probably need glasses and/or
patching to correct her straying right eye, the news still came as a
shock for us.
Zoe
is very
long-sighted in her right eye (+7 diopter), which means that she's been
relying mainly on her left eye for vision. Without correction, Zoe's
right eye is liable to stray even more, become a lazy eye (if it isn't
already), and risk poor brain development/learning difficulties (not to
mention potential loss of vision in that eye).
The
doctors
will want to patch her left eye in a few months, but we will have to
assess that then. As it is, it will likely be a challenge to get her to
wear the glasses as Zoe, at the best of times, does not like her face
touched! Still, we hope she will surprise us by adapting to it quickly
just because she will be able to see/function better.
We
were lucky
to be able to arrange for an ear/nose/throat doctor and an audiologist
to check Zoe while she was under GA. They gave her the all clear, thus
eliminating a couple more possible reasons for her lack of language...
 Meanwhile,
Zoe's walking is improving in that she is not falling over as much.
Although her gait has not improved, none of her therapists are
concerned about her inward turning right foot yet as they believe it
may correct itself as her balance improves.
With
her improved mobility, Zoe now loves spending time wandering and
pottering around the garden more than ever!
April 2008
An
amazing
thing happened this month – she started to vocalise more, and
even take instructions (well, sometimes). We attribute this change to
her wheat-free diet.
Independent
observations from therapists and friends who did not know about the
change in diet were the prove that we were not imagining the changes.
Her regular therapists found her more responsive and vocal, and a
friend at Zoe's playgroup said Zoe was "different" – looked
happier.
This
all happened when she was suffering a bad flu as well, and so we were
really surprised, and hopeful.
Really,
we
could not be happier with the result and will continue seeing the
kinesiologist to fine-tune Zoe's diet. This certainly complements the
HANDLE program/approach, which we are eagerly awaiting to start.
Meanwhile,
although her gait is still a concern (especially her right foot, which
"curves" inwards from her trying to "grasp" the ground), her balance is
slowly improving. She is even liking, and voluntarily, standing on the
wobble board, and has lately taken to standing/walking on our bed! The
look on her face as she enjoys her new-found skills is just priceless.
March 2008
This
month’s update was deliberately late as I wanted to
incorporate more new news.
Mitch
was
full-time dad for two days/nights whilst I attended a workshop in
Brisbane. Zoe’s change in behaviour as well a seeming plateau
in
her learning in the last few months prompted us to re-analyse her
therapies and our parenting ways again.
 We are hoping
that what I learned at the HANDLE workshop will help us better
recognise the signs of “stress” in Zoe that impede
her
brain development/learning, and to be able to understand how her
“acting out” episodes, where she hurts herself
(e.g.
flinging herself out of our arms, head-banging).
We
are looking
to have the HANDLE practitioner analyse Zoe in a few weeks,
and
who will then recommend appropriate HANDLE activities for her. We
really believe that if the science behind the method is correct, this
will provide a sound basis for her other therapies (e.g. physio, OT,
speech) as Zoe’s brain/system will then actually be in the
position to receive the benefits of these therapies!
We
also decided
to see a recommended Applied Kinesiologist about Zoe’s diet.
It
was quite a surprise (though not completely just because we’d
read about dietary implications on the HANDLE website) that Zoe is
likely not taking well to wheat products. At this stage, we
wouldn’t say that she is wheat-intolerant, but we have taken
her
off wheat just to be on the safe side. We are monitoring her behaviour
and wellbeing with interest, especially with her levels of
energy/alertness! We’ve only had one consultation so far and
will
be doing a few more (muscle) tests to ascertain if she may be reacting
to other foods as well. Hope not!!
I
won’t
give a break down of her progress this month as it is similar to last
month’s…and the months before – hence
the new angles
of approach! We hope to be able to start writing of significant
progress again soon!
February 2008
This
month signalled the full swing into therapy and classes again for 2008.
Zoe
is
gradually getting used to the special education playgroup she attends
once a week during school term. Although she still holds back when she
gets to the class, or any therapy setting, the time she takes to get
used to the "new" surrounding is noticeably shortening.
This
month was
also one of visits to doctors and therapists. She had her chicken pox
vaccination done, and she also had to have her eyes checked again (the
last one being almost 14 months ago). Unfortunately, the paediatric
opthalmologist didn't get far. As you can imagine, it must be quite
terrifying for a little child to be held down and have some stranger
shine a bright light into their face while prying their eyes open.
Well, Zoe was one such child. As such, she will have to undergo another
check in a couple of months, this time under general anaesthetic as we
suspect she has a lazy right eye. We have held off having Zoe go under
GA (for an MRI), but we will need to do this as it could be corrected
if caught in time.
As
for her
walking, she is doing that as much as she crawls now, and can walk
pretty quickly. However, as she is still quite unstable (read, keeps
toppling backwards), Natalie has orders for us to challenge Zoe's
balance and strength building as much as possible – this
means,
more time on the balance board, and more climbing and non-stop walking
to build her muscle strength.
Gross motor:
walks regularly, squats to pick objects up/play, high-kneels
Fine motor: fingers
are gaining strength to push stiffer buttons
Language: starting
to make noises (e.g. babbles, squeals, hums) even when she is in a new
environment
Cognitive: learns
how to work new toys much quicker
Self-help: learning
to jab food with a fork with occasional success
Social: loves
feeding us food, good at sharing (especially food), learning
turn-taking
Next Targets: to
walk with a narrower base and more stably
January 2008
It
was a slow
start to 2008 in that Zoe didn't attempt to walk (or even stand
independently) for more than two weeks after she made that epic 9m
walk. Then late one Saturday afternoon, she got up and did it
again, and hasn't stopped since. She is slowly but surely on
her
way!
Her
gait and
feet will need to be accessed, as she is walking rather stiff-leggedly
and her feet are pronating. This does not stop her from walking though,
and she gets up and tries again, and again, with each fall –
showing us what a resilient little girl she is.
 Her therapists
are really happy with her progress and have set new goals for the year.
For example, because Zoe is not taking to signing, we will
be trying
flashcards as a means of helping her communicate.
For
the moment,
her gross motor development – which is allowing her to wander
away from us, and yet wanting always to have either of us within her
sight – her going into the "terrible twos", and her
difficulty in
making us understand what she wants, is resulting in lots of screaming!
Gross motor:
walking, gets up to stand from squatting position
Fine motor: able to
push small buttons, learning to fit sized objects into appropriately
sized holes
Language: making
more noises, loves blowing "whistles" and the recorder
Cognitive: better
understanding of cause-and-effect (seen from her computer keyboard and mouse
skills!)
Self-help: feeds
herself with a fork (although she can't quite get the food on the
prongs yet)
Social: taking less
time to get used to new surroundings
Next Targets: to
walk with a narrower base
December 2007
What
a year it
has been – 12 months ago, Zoe could not get herself up to sit
on
her own; a year on, she's started to take steps.
Although
Zoe
had been taking a few steps each day since the end of November, the
progress was arrested by two events: i) my family visiting (as everyone
wanted a cuddle, Zoe did not get as much practice); and ii) Zoe falling
ill. After a week of unrelenting fever, a trip to the hospital, and
many sleepless nights (and days), Zoe did not attempt to stand
independently, let alone walk, for more than a week.
 Visibly weaken
by the bout of illness (which we thought was teething pains, turned out
to be an ear infection), we had to start feeding her up to build her
strength again. We also began taking her out to walk on the grassy
slopes at a nearby beach – one of Natalie's suggested
exercises
to strengthen Zoe's glutes.
By
Christmas,
she was taking up to five steps at time. And then two days before the
end of 2007, at a friend's home, Zoe surprised us all by walking 9
metres, without any prompting or help! It's four days since, and
although she has not repeated the performance, we are still on a high
from watching our little girl walk!
She
seems to be
developing a little quicker now. For instance, she's had five new teeth
just this month alone (the molars and the a canine), her
grasp-and-release has improved dramatically, and she now consistently
"directs" us to what she wants (e.g. takes our hand to get us to do
something for her).
The
last 12
months has been an emotional, hectic (and tiring) time for us, but it
has also been one of much joy and pleasure to watch Zoe develop and
blossom into a little girl.
Thank
you to
all our family, friends, and therapists who have been so encouraging
and supportive, and for walking this journey with us!
PS.
I can't help myself and have to share this one other news with you
– on Christmas morning, Zoe crawled up to me and gave me a
kiss
on my cheek. As she had never done that before (only sometimes to her
toys), this was so special.
Gross motor:
taking steps, attempting/learning to get up to stand from all fours
Fine motor:
"posts" well (i.e. puts shaped objects into little holes), learning to
stack, learning to take stackble blocks, etc. off without toppling the
tower
Language: no
distinguisable words as yet, but lots of little sounds and humming
Cognitive:
able to ask/demand by gesturing (e.g. knocking on the door or trying to
turn the doorknob to have it opened, putting boxes in our hands if she
wants us to open them or any other object that she wants us to operate
for her)
Self-help: able to
eat/bite whole fruits (e.g. bananas, apricots) on her won, tries to put
on her own hat
Social: approaching
children (she does not know) at play
Next Targets: to
walk consistently (instead of crawling to reach objective)
November 2007
Lots
of news and excitement this month!
Zoe
turned two on the 7th and we had a great party with her little friends and their mums/dads.
Zoe
also
started attending a weekly playgroup at the Special
Education Development Unit,
which is part of the local state school.Being a naturally quiet girl,
Zoe is slowly getting used to all the people/children and the mixture
of structured and unstructured play at these 2-hour sessions. Although
she screams and resists being helped (e.g. hand-over-hand assistance)
with some activities, we hope that tactile defensiveness will lessen as
she attends this playgroup regularly.
We've
saved the
best for last – ZOE TOOK HER FIRST STEPS on 29 November!!!
She
started off free-standing on her own accord at the playground one day,
and with that new-found confidence took a few shaky steps the next.,
and also started attending a weekly playgroup at the Child Development
Development Unit which is part of the local state school. She has been
doing this a few times a day since, walking about 2-3 feet at a time
between furniture – of course ONLY when she wants to or feels
like it. And preferably when no one is really watching!
Gross motor:
occasionally walks between furniture, can stand independently after
pulling up on furniture, starting to learn to squat (or bend over to
scratch her toes and then get back up!)
Fine motor: starting
to learn to stack, puts things back in their containers
Language: has made a
couple of distinct sounds like "boo" and "mum mum" on occasion, hums
for singing
Cognitive:
mimics/copies more quickly and accurately (e.g. clicking of tongue,
finger/hand actions when we sing to her), excellent spatial awareness
Self-help:
can bite off food (while she's been eating solid foods for a long while
now, she could only chew on pieces given to her, not bite off from
chunks)
Social: approaches
other children to share at their play
Next Targets: to
improve balance while standing and walking
October 2007
Apologies for
the late update and the problems with the September photos! October was
busy month – we had to sort out help with caring for Zoe, and
getting her back on the therapy train!
 Zoe’s
progress with her gross motor skills seemed to be stagnating
– as
you saw from our September log
– and so we decided to
consult Natalie at Ablecare early in October. Natalie found that
Zoe’s gluteal muscles (the ones that make
up the buttocks) were
quite weak, which affected her strength to hold her torso steady and
ability to “walk” with her legs under her hips.
Natalie’s
suggested treatment was to have Zoe walked non-stop for at least 15
minutes a day. Seeing as Zoe actually loves walking around (especially
in the garden), she walked up to at least an hour at a time, and within
a couple of days, we saw the difference.
Not
only is her
grip on our finger a lot lighter, Zoe now walks with her
There
has also
been a marked improvement in her ability to learn (how to play) new
toys and to obeying a couple of simple commands (e.g. handing an object
over when asked. Well… half of the time!).
Gross motor: walks
with an almost normal gait (with one hand held), starting to
squat from standing to pick objects off the ground
Fine motor: able to
"post"/release objects into holes (e.g. shape-sorter toys, bottles) and
learning to place lids back on boxes
Language: gestures
more to indicate what she wants
Cognitive:
problem-solves with toys that challenge her
Self-help: learning
how to feed herself (e.g. dipping her spoon into the bowl and
transferring the food to (the proximity of!) her mouth)
Social: much better
at responding in interactions; able to be left to play in a foreign
environment for a few hours without us around
Next Targets: to
stand or take some steps unaided
September 2007
Not
too much to
report this month, except that Zoe is now really quick when "cruising"
along walls and furniture, and climbs anything she can get one knee on
top of.
And
even though
she now refuses to stand independently (since last month's display),
Zoe does regularly stand leaning against a wall or furniture, so we
think it is a matter of time before she is confident enough to stand
without any propping.
 She also enjoys
walking having one hand held, but tends to tire quite quickly.
Obviously, she is not ready for it yet, and so we are trying to be
patient!
Now
with eight
teeth, Zoe is also starting to eat a bigger variety of foods (fruits,
especially), not to mention chomp down on fingers – ours!
Gross motor: walks
(albeit unsteadily) with one hand held
Fine motor: much
better at pressing buttons (e.g. changes channels on the remote!)
Language: babbles
and squeals, uses gestures to indicate what she wants
Cognitive:
understands a lot of what we say in everyday language
Self-help: she
understands routines very well (e.g. dressing for bed, to go outdoors),
she is also learning how to feed with a spoon
Social: is very much
more sociable with unfamiliar people – smiles and approaches
them
Next Targets: to
stand independently, to "walk" (aided) with legs under hips
August 2007
How could I
ever forget 14 August! Zoe stood on her own, for the first
time,
for about 3 seconds! She has done this a few more times since, but it
was such an unforgettable sight to see our little girl free-standing.
This
was the highlight of highlights as Zoe's been making many bits of progress.
Her
determination to climb up the slide of her borrowed playgym (with
socks
on) has paid off and she now does it regularly, and slides down it
sitting. She is also displaying very good problem-solving skills when
posed with challenges – e.g.
manoeuvering in and out of low/tight places, retrieving balls from
under the sofa, etc.
Apart from
knowing that clicking the mouse gets the screen to change (an amusing
sight as she alternates it by pounding on the keyboard), Zoe is also
now mimicking other hand/mouth actions a lot quicker.
 Progress too with her
chompers, with the sixth (bottom left) and seventh (top left) teeth
coming through this month.
As Zoe would do when she
does something she thinks is clever, we applaud her tenacity and
progress!
Gross motor: can
"tall kneel" for a couple of minutes, stood briefly a few times, waves
bye-bye
Fine motor:
starting to correctly fit balls into round holes, learning to press
buttons and scribble with crayons, making stirring motion with spoons
Language: babbling
louder than ever
Cognitive: knows
purpose/use of everyday objects
Self-help:
knows how to bend and then straighten her arms to put her shirt, knows
purpose of some objects (e.g. toothbrush, hairbrush, key)
Social: shows
affection (loves cuddling), happy to be left with other children to
play (without us hanging around)
Next Targets: to
stand independently for longer periods/more stably, pick up some
language
July 2007
Great
news
first – Zoe passed her hearing test with flying colours! This was
her third attempt as Zoe was not developmentally ready to co-operate in
the first two attempts (December 2006 and April 2007). Although she was
tested at birth and passed, Queensland Health flagged her for another
test at one year of age because of her low birth weight, which puts her
at high risk for progressive hearing impairment.
It
seems that
Zoe's upper body is still not strong enough to help her
All
said, we
are really pleased with Zoe's progress. She's a good eater (i.e. not
too fussy) and so is catching up weight-wise – about 10kg,
which
is a far cry from the 1199gm at birth – and is becoming quite
lanky.
Gross motor:
learning to bend her knees to get down
Fine motor: pincer
grasp getting better, and she now sticks her index finger into any
little hole she sees
Language: still
babbling
Cognitive: knows
certain routines now (e.g. looks at or picks up her pyjamas when I
towel her off after her shower)
Self-help: clearly
knows how to raise and bend each leg in turn to have her pants put on
Social: approaches
toddlers whenever she sees them, and lets less familiar friends hold her
Next Targets: more
crawling to build up her upper body and core strength
June 2007
Apologies
for the delay in updating the website. A few hiccups with our Internet service providers,
but we are back!
Zoe
commemorated the move to the new house by having her fifth tooth. And
falling ill, twice. In spite of all these changes and "setbacks", she's
been making progress. She is a lot more active –
loves
climbing, crawling up and down steps, "walking" with the help of a toy
train walker, etc. Her favourite past-time these days is using the
dining table/chairs as a playgym, crawling under and between the legs.
 Her fine motor
skills are also improving a little – she manages to get every
single morsel of food (including crumbs off the floor) into her mouth.
She is also getting a bit
chattier, albeit only with certain people
(i.e. immediate family) and only when she feels like it. We are still
unable to determine if her hearing is in any way impaired, which may be
a reason for the speech delay, but she will be put through a hearing
test again soon.
Meanwhile, her
cheeky personality and tenacity are certainly showing, and we are just
enjoying all the progress and all the new little developments she is
showing.
Gross motor:
beginning to transfer between furniture and "cruise" along walls,
crawls very quickly now
Fine motor: signs of
the pincer grasp with the left hand (Dad's left-handed)
Language: has
moments when she babbles for long periods
Cognitive: shows
excellent memory and curiosity
Self-help: starting
to help us dress her (e.g. bending and straightening her arms at
appropriate times)
Social:
loves children, loves cuddling up/being cuddled (which was something
she didn't like very much six months ago when she was very tactile
defensive)
Next Targets:
independent standing
We
are late
with the latest update for a good reason – we moved to a
larger
home at the end of May. Zoe settled in almost immediately and now has
her own play/therapy area and a garden to, as they say here, "muck
around" in.
The
extra space
has been a (calculated) blessing as Zoe is now much more curious and
gets bored a lot quicker. In fact, she is quite a different girl from
last December, when she was still very tactile defensive and difficult
to motivate.
Her
favourite
playthings these days are a very large doll and the baby
On
the
flipside, the standing-leaning-against-the-wall episode we mentioned in
last month's update was just that. An episode that lasted two days.
Nonetheless, we are not too concerned as we think she may be just
consolidating her skill in supported standing, and one of her
physiotherapists, Natalie, believes her motor-planning is on track. So,
we are adopting a wait-and-see approach, while continuing to encourage
her to keep doing what she can better.
Gross motor:
"Cruises" along furniture and sometimes holds on with only one hand them
Fine motor: can pick
up small pieces of food and put them in her mouth quite accurately
(even without the pincer grasp!)
Language: can be
very vocal at times, and uses body language to indicate what she wants
(e.g. go outdoors to play)
Cognitive: shows
problem-solving when trying to get down from furniture, playing
hide-and-seek, etc.
Self-help: feeds
herself finger-foods
Social: less
apprehensive about approaching unfamiliar people
Next Targets: learn
to high kneel and squat; independent standing
April 2007
This month was
one of growth. Zoe is no longer content to sit around, but pulls to
stand whenever she can get her hands on something high. And if there is
a largish surface, she will even attempt to clamber upon it! Yes, Zoe
is truly a little girl now – no longer a baby.
 She finally got
some orthotics fitted into her little shoes early this month, and wears
them for a few hours a day when she practices her standing. The
orthotics keep her from standing on tip toes for too long and her feet
from pronating as badly. Nonetheless, Zoe is learning to stand with her
legs closer together, thus improving the angle of her ankles/feet.
The biggest
surprise for us, however, happened a week
Zoe
does not
receive any more laser treatments, and her therapy for gross motor
development now consists mainly of exercise/practice. Part of her daily
therapy now consists of squat-to-stand exercises and standing leaning
against a wall, and the rest is practice, practice, practice. She still
receives fortnightly osteopathic treatments.
Apart
from
that, we are encouraging her to use her hands and to vocalise as much
as possible. So, we hope to be able to write in the near future of her
developing fine motor skills and speech.
Gross motor:
"Cruises" a little along furniture and sometimes tries to climb onto them
Fine motor: can put
golfball-sized objects into holes, very good at turning pages
Language: more vocal
– squeals when excited and "talks" more
Cognitive: knows
exactly how to manipulate her parents!
Self-help: feeds
herself semi-solids
Social: less shy
with people she is not familiar with and now sometimes babbles in their
presence
Next Targets:
improve standing balance; learn to high kneel and squat
March 2007
Zoe
continues
to make progress. Her crawling has picked up speed, and curiosity and
courage has motivated her to start exploring the rooms in our home.
 Just as March
drew to an end, she also started to pull herself up to stand! The next
challenge will be to get her to stand flat-footed, bearing weight
evenly. At the moment, she stands on tip toes and pronates inwards,
resulting in the bottoms of feet being pushed out and very tight calf
muscles and tendons.
Zoe
will get
some orthotics fitted early April to correct how her feet position in
hope that she will not need to use splints later on in her development.
We
will also be
trying to get her use her leg muscles for standing, instead of her
extensor reflexes (which is what she does now) as the latter keeps her
stiff legged and not able to lower herself down to floor gently.
And
last but not least, Zoe's got her two upper teeth!
Gross motor: Pulls
herself up to stand (on tip toes), gets on all fours (in a yoga
downward-dog position)
Fine motor: no
pincer movements yet but seems more adept with her fingers when
exploring
Language: babbling
more new sounds
Cognitive: loves
playing hide-and-seek and knows where to find her toys, loves musical
toys
Self-help: can hold
her own bottle and help herself to whatever food she finds!
Social:
still passive when playing with other children but loves their company,
quicker at getting used to people she doesn't often meet
Next Targets: better
stability; learn to kneel, point feet less when standing, learn to
cruise
February 2007
We
had a busy
start to the month, with Zoe having three consecutive days of therapy
with Ablecare. This
has given a good boost to her progress...
particularly her crawling.
Visits
to
therapists have scaled back quite a bit – mainly because Zoe
is
making good progress and the therapists believe that she now needs time
to consolidate her progress between treatments.
Things
are looking much more positive then when we started this website! Zoe
is making good use of all the help she gets.
Gross motor:
Consistently cross crawls now - slowly but surely! Crawls around the
living room and even into the bedroom. She can bear some weight on her
hips and legs when we help her balance in the vertical.
Fine motor: no
pincer movements yet, but she manages to get single sultanas in her
mouth with 90% accuracy!
Language: babbling a
few more new sounds
Cognitive: starting
to copy some actions (e.g. clapping, banging)
Self-help:
feeds herself water from the sippa cup
Social: loves
touching and being near babies and toddlers
Next Targets:
better stability and weight-bearing through hips sit, learn to extend
her legs more when crawling; point feet less particularly when they
bear weight.
January 2007
What
a start to
2007 it has been. Zoe caught a cold for the first time –
after
she kissed (or rather, licked) a boy for the first time. Exciting for
her, but what was exciting for us was that she started to tummy crawl
and to push herself up to sit on her own. In fact, in this last week of
January, she has even started to rock on her hands and knees and crawl
on all fours a little. This has been truly a "breakthrough" as we'd
perceived a bit of a plateau in her progress at the start of January.
We
resumed her
osteopathic and laser treatments after the two-week Christmas break and
this is possibly what nudged the progress along. This month also saw
Zoe starting therapy with the Physio and Occupational Therapists from
the Cerebral Palsy League, and we are just waiting for the Speech
Pathologist to come on board.
We
have also
been touched by some generous donations (thank you!) – all of
which will of course go towards Zoe's therapies. Part of it has already
been used to purchase a low-level laser unit that enables us to treat
Zoe daily. This came about after much research and consultation with a
research professor of Neurology in Boston and an acupuncturist in South
Australia that increasing the frequency of laser treatment would help.
The
Web has
truly enabled us to access knowledge and expertise from our living
room. We are so grateful to the people (experts and parents alike) who
have taken the time to respond to our emails, asking for their
experience/opinion/advice.
Gross motor:
can sit unsupported for about 30 minutes; can sit up on her own;
"commando crawls" a couple of metres and can (just in the last few
days) crawl on all fours a shaky metre or two.
Fine motor: slowly
learning to pick smaller objects up
Language: babbling a
few new sounds
Cognitive:
works out how to get around problems like where to put her hands to
give herself a bit more support; sometimes copies our hand movements
Self-help: able to
get the last bits of food clenched in her fist in her mouth
Social: much more
curious
Next Targets: sit
without losing balance; strengthen arms/shoulders and extensors; learn
to extend her legs when crawling; point feet less
December 2006
Having
Zoe at
home with us was the best Christmas gift this year. And the progress
she's made in the last four weeks – bonuses.
We
suspect that
the Laser Therapy at Ablecare
is helping as we see positive changes in
her movements (e.g. she opens her hands better, makes less jerky
movements) a couple of days after each Laser Therapy session.
 As a result, we
were able to teach her to start holding cups and large chunks of food.
The biggest improvement, however, would have to be her sitting. Zoe can
now sit unsupported for up to 15 minutes. While her back still curves,
she now knows to reflexively extend her arm out to prop herself up if
she feels unsteady.
And yes, Zoe
got what she wanted for Christmas – her two front teeth. So
now
she chews on anything she can get her hands on, and with her new
enthusiasm for exploring, she's getting into quite a lot!
Gross motor:
can sit unsupported for about 15 minutes; rolls onto front and tries to
get up on fours; side braces when sitting; tolerates being on tummy a
lot better; (26 Dec) moved forward a couple of inches on tummy!
Fine motor: left
hand opens well (right still have thumb inward occasionally); bangs
toys together; reaches out for any new object
Language: babbling
more
Cognitive: much more
interested and motivated to reach for toys; likes simple picture books;
looks for objects she drops
Self-help:
recognises bottle (and can't wait!); lifts sippa cup; self-feeds with
chunky food (can't pick small pieces yet)
Social: smiles and
laughs with strangers too; reaches out to touch other babies/people
Next Targets: sit
longer and better unsupported; consistently try to get on fours; tummy
crawl; point feet less
November 2006
Zoe
turned one
this month. There was still some "confusion" though, as to when we
should celebrate her birthday as she was not due to greet this world
till January this year.
In
all the
flurry of activity after we found out about her brain injury
--
we spent many hours each day researching, and talking to and seeing
therapists -- we did not plan a big birthday party for our darling. But
what we did that 7th day of November was special.
Zoe
had a first
picnic cum birthday party. Her fellow 10-month old friend, Harley, a
couple of our friends, and our Reiki master, were there. Zoe sat like a
little princess in her Bumbo seat, wore her party hat without fuss,
chewed on her shiny gift-wrapped presents, and smiled for the cameras
as we sang her birthday song.
 Zoe's been a trouper.
She has been seen and handled by so many people this month, and she is
still her good-natured self.
In
addition to
physiotherapy, Zoe has had a couple of cranial-osteopathic treatments,.
We've been implementing the exercises given by the physio as best as we
can (Mitch has stopped work indefinitely so that we can devote more
time to helping Zoe), and we have already seen some small progress.
Although
we
would like to start the NDTP exercises as soon as possible, we will not
be able to do that until we get enough volunteers. FOBIC has been
generous enough to lend us a patterning table and "slide" for her
therapy, and so we are now just literally waiting for helping hands...
Gross motor: sits
better supported, better neck strength and head control
Fine motor: keeps
hand open more; uses her hands more for play (instead of for balance);
reaches for things on the side of her
Language: babbling
more
Cognitive: looks
very intently at objects (and people); peers round corner to look for
hidden objects
Self-help: retrieves
dummy from around her and puts it right way round in her mouth
Social: smiles and
laughs more
Next Targets:
sit unsupported; roll more from back to tummy; more comfortable on
tummy; less tactile defensive; open hands more; keep thumbs free
October 2006
Although
we
knew that Zoe's development was not up to speed even after taking into
consideration her prematurity, it still left us stunned to hear the
paediatrician say, on October 26 – just 12 days before her
first
birthday – that she thought Zoe has cerebral palsy...
We
were
galvanised into action as soon as the initial shock wore off, and Zoe
began private physio therapy on 31 October; and Mitch and I did a Reiki
course ourselves so that we can give Zoe Reiki everyday.
We
are researching into alternative or other less conventional therapies,
e.g. laser acupuncture; neuro-developmental therapy.
Gross motor: rolls
from front to back and very occasionally from back to front
Fine motor: hold
objects in primitive grip and sometimes reaches for dangling toys
Language: coos and
gurgles; babbles once in a while
Cognitive: looks
intently at people (but not toys); recognises herself in the mirror
Self-help: puts
dummy into her mouth and quiets self with sucking
Social: smiles
mainly for us and normally at home
Next Targets:
roll consistently from back to tummy; improve hand skills; take more
interest in and be motivated to reach for toys
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