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19thJuly
We have still managed to keep
Billee out of hospital this winter!
She has however had tonsillitis
again but she seems to have bounced back quite well and just has a
little cough at the moment.
She is shouting and babbling lots
and is making tiny minor improvements all the time.
The therapy that we have now been
doing since March this year seems to be having more effect than
anything else we have tried in the past.
It is called MAPS and it is based
on brain plasticity and the belief that the brain can repair itself
given the correct input.
Billee had her 6 monthly
ophthalmologist appointment a couple of weeks ago.
All that is required of Billee is
for her to open her eyes. Pretty straight forward
hey?
Well the last time we went she
slept for the whole appointment and then this time she cried from
the moment we entered the building until we left!
It was unbelievable she was as
happy as could be as we approached the rooms and then again in the
lift on the way out!
Her Doctor was able to get enough
of a look to be able to tell us that her eyes are still in good
shape. She has no damage to any part of her eye but what she sees
is dependent on what her brain is interpreting it as.
In other words her eyes are
seeing everything but they are not sure what her brain is telling
her eyes it is seeing.
Trust me from the way Billee
looked at my Mum today, the smile on her face and the way she
opened her mouth and tried so hard to talk to her, I have no doubt
that her brain was telling her eyes that is her Nanny.
Sometimes we just know so much
more than any professional could ever tell us about our little
girl!
We have just finished winter
school holidays here in Australia so Billee has had her big sisters
to entertain her and harass her!
We have also been able to buy her
some new toys which are specifically suited to her needs and
abilities.
We would like to thank you for
your continued support, fundraising and donations which enabled us
to pay for the toys.
As like everything that has a
special needs tag attached to it the toys we bought were
ridiculously expensive in this country.
Luckily I found a website in the
USA who was able to ship us the things we wanted for an absolute
fraction of the price.
(One toy was priced at nearly
$800 here and we got it for under $200 there!)

At the moment we are raising
money to pay for Billee’s next MAPS assessment and 6 month
programme which is scheduled for September.
We are also looking to buy Billee
a bed.
At the moment she sleeps on a
queen sized mattress on the floor as advised by AIAHP.
The reason for this is so that
Billee’s movement isn’t restricted and she is able to practicing
rolling etc..
It has also been great for when
she has been sick or when one of her big sisters wants to cuddle up
with her!
For this reason we are sticking
to the same size but a wooden frame with side rails that is also
adjustable.
I am finding that it is getting
harder and harder to pick her up from the floor the heavier she
gets.
Thank you to the following people
and places for their support:
- Curves at Caringbah and their
customers
- Lisa Young and
family
- Bobbi & Tony
Conway
- How Bizaar Hair Salon at Sans
Souci
- Uncle Pete’s Toys at Brookvale,
Castle Hill, Wollongong and Manly Vale and their
customers
- Corrie’s Hair Escape at
Caringbah
- CBINE Hair Salon at
Sutherland
- Every one that has bought
chocolates, boxes of cards and bags
I still have more chocolates,
boxes of cards and gift bags so if you missed out last time but
want some now please e mail me asap.
Thank you also to Kylie Minogue
and her agent for sending me a signed CD and photo to
auction.
My very good friend Vickie is
organising another fundraiser in September.
We are just waiting on
confirmation of the date but there will be a great band playing on
the night and you will be able to either buy individual tickets or
a table of 10.
Of course there will be raffles
and maybe an auction as well.
If anyone wants to donate prizes
please e mail me and I will update the website as soon as tickets
go on sale.

20thJune
Billee has been in pretty good
shape this month.
She’s had a sore throat, cough
and cold but nothing that has led to any hospital stays.
I wanted to make this update a
little different by adding more photos.
Firstly I would like to say a
huge thank you to all of you that have taken boxes of chocolates to
sell.
The first 30 boxes flew out the
door which means $864 raised already!
I have ordered more boxes so if
you would like to put a box at work I can provide you with a short
write up of Billee’s story to put alongside it.
The big news about our beautiful
girl this month is she is finally off of Keppra (one of her seizure
meds)!
We have an appointment with her
Neurologist at the beginning of August when we will discuss the
decrease of the next one.
The Ketogenic diet is still going
well and it has now been almost 1 year since any seizure
activity!
We have an appointment with
Billee’s ophthalmologist this week for a check up to see how her
vision is coming along.
In recent updates I have
mentioned that we are working on a different therapy with Billee
called MAPS.
As a result of this programme we
are noticing the following things:
- * Billee is looking at her hands
a lot more and for the first time last week she began looking at
the palm of her hands.
- * She is moving her mouth lots
more and swallowing. (We will be trialling small amounts of food
soon)
- * She is babbling and shouting
lots more!
- * She has become a lot more
alert and aware of us and her surroundings. This means that she is
able to object to the things that she doesn’t like and voice her
frustrations more when she is restrained in her seat
etc....
- * She is almost rolling
over!
- * Billee’s legs have always been
very ‘frog like’ in appearance. They seem to turn out which makes
it impossible for them to sit straight. BUT check out ‘Little Miss
straight legs’ in the picture below!

All these gains are tiny I
know.
In fact would you even notice
them in a ‘normal’ healthy child?
I’ll now leave you with some photos of Billee
surrounded by love:
 
 
  
 
20thMay
Billee has had a pretty good
month again!
Even though we are heading into
winter so far she has stayed well with no hospital
visits!
At the end of this month she will
be off 1 of the 3 seizure medications that she is currently
taking.
After this we will speak to her
neurologist and decide which is the next drug she can safely come
off.
The ketogenic diet is still going
well as is Billee’s feeding button.
We were hoping to have tried her
with some pureed food by now but we are having a few problems
keeping her restrained in her chair long enough without her
screaming!
The MAPS programme that we are
currently doing with her seems to be showing positive
signs.
One of those positive signs is
that Billee is ‘feeling’ more and objecting to things more. Her
personality is shining through and even though she is unable to
talk she is still making it very clear when she doesn’t like
something!
Being restrained in ANY of her
chairs is one of them. This is making feeding time very difficult
as due to having a G tube she has to sit upright during the feed
and for at least half an hour afterwards.
This decreases the risk of Billee
aspirating as aspiration is the most common causes of death in
children with Lissencephaly.
On the up side though she is
babbling (well shouting!) a little more and also nearly rolling all
the way over.
Billee is currently on a 6 month
MAPS programme and we are working in very close contact with
Claudie in Canada who updates Billee’s exercises every 2 weeks
based on in depth reports and conversations with us.
As we get further in to our
journey with MAPS I will post more info but for now if you want to
know more their website is www.unlimitedbrain.com
We met a lovely family last
weekend who also has a beautiful little girl with
Lissencephaly.
Bec and Matt only live an hour
away from us and I have been e mailing and chatting to Bec on face
book for ages.
Alyssa is 3 and is amazing! They
also have a new little baby boy called Ashton who is
gorgeous!
Even though this was only the
first time we had met it felt like we had known them for years and
we are looking forward to many more days like Sunday.
Billee had her hair
cut!
I had been hesitant to get it cut
due to the hot weather here in Australia. I had been able to pull
it all off of Billee’s face into a pony tail keeping her cool but
the back of it was so thick and knotty all of the time!
Anyway now it’s cooler weather we
took her to the hairdressers and she screamed for the whole hair
cut!!
Thanks to Jade from Cories Hair
Escape for cutting it and to Corie for not charging us!
I will post pictures on the photo
pages but she looks gorgeous still!
Also this month thank you if you
donated over the website or sent a cheque.
The constant stress of
fundraising is never ending and sometimes I wish a business or very
rich individual would notice her and support her fight so that we
can just concentrate on her therapy.
Any millionaires out
there!!??
Seriously we appreciate all of
your donations and fundraising efforts enormously.
I would especially like to thank
the following:
- Uncle Pete’s toys in Manly Vale,
Castle Hill and Brookvale and all of their customers.
- How Bizarre Hair
Salon
- CBINE Hair Salon
- Cories Hair Escape
As much as I hate mentioning this
I really have to as we have huge therapy costs coming up in a few
months time.
If you own a business (or work
for a very nice boss!) maybe you might be able to have a donation
tin there for Billee.
The above businesses have tins
and their customers are very generous.
I would supply you with a
laminated A4 write up about Billee and her condition with photos.
Also a glossy banner style picture to wrap around the tin. (Tins
are about $2 from cheap shops!)
It is all colour co ordinate and
looks very professional!
Just a thought?
I know we have lots of people
registered now and I’m sure there must be some hairdressers or
business owners out there who are wondering how they can
help!
Please e mail me if this sounds
like something you could do even if you are in a different
country!
Even though we are still waiting
for Billee to achieve her first major milestone with her
development she is reaching tiny mini milestones all the
time.
We have learnt to treasure these
moments whether it be a simple movement or a different
sound.
We feel that she is heading in
the right direction because any improvement is
significant.
We are aware how long the road
ahead of us is and how difficult some days can be but we embrace it
with enthusiasm and positiveness for as long as we have that
precious little face smiling up at us we know we can’t
lose........................................................................

and
never give up...............................
19thApril
This month has been a busy and
hectic one in our house!
Firstly my cousins Carole, Lee
& Charlie came to visit from England which was
fantastic.
Billee loved seeing them again
and they fell in love with her all over again!
We had a lovely Easter and the
girls all got lots of chocolate from the Easter Bunny.
Billee has had her 2 big sisters
to play with since they have been on school holidays. Even though
she has loved having them around we are both looking forward to a
peaceful Tuesday when school goes back!
Billee has remained healthy this
month and we have had no hospital stays!
She is still seizure free (touch
wood!) and is still doing very well on the ketogenic
diet.
The area around her feeding tube
that was badly burnt some months ago is now looking good and the
skin tag is almost gone.
We have seen some definite
improvements in Billee since we started her new therapy
programme.
She babbling and laughing a lot
more, even shouting!
She is also rolling over onto her
tummy again, something she stopped doing about a year
ago.
She is looking at her hands a lot
more and you can see that she is really concentrating and trying to
move them in a more controlled manner.
MAPS is all about brain
plasticity and the brain being able to repair itself by performing
specific exercises targeting specific areas of the brain
creating new neuron pathways and assisting in nerve cell
migration.
I will go into lots more detail
regarding the programme in future updates and for those of you that
are really interested I am also writing a blog about the exercises
and Billee’s progress.
At the moment I just want to make
sure the progress continues and other things start happening before
I go off on one!
Many Thanks to the following
people this month for your continued support and
donations:
- * Uncle Pete’s Toys at
Brookvale, Castle Hill and Manly Vale and all their
customers.
- * How Bizarre hair salon at Sans
Souci and all their clients.
- * CBINE hair salon at Sutherland
and all their clients.
- * All of you that have bought
boxes of cards and helped to sell them to your friends and
family.
This month has been one of the
smoothest months we have had with Billee in a long time. I believe
this is due to a number of things.
Firstly having seizure control is
hugely important. Billee’s brain is not under constant attack and
is able to develop and learn. I am very aware of how extremely rare
this is in children with Lissencephaly and I am also very aware of
how suddenly the situation can change. Therefore we are counting
our blessings each day that she remains this way.
Having the feeding tube has been
a great help and has given Billee’s brain more time to focus on
developing instead of working hard to get the correct amount of
fluid, nutrients and medications into her body.
Starting MAPS and eliminating a
lot of the stress in Billee’s life. When I say stress I don’t mean
stress like her sisters shouting and arguing (that’s just life!) I
mean stress to her body and brain like forcing it to do things that
it is unable to do yet.
Just giving her lots of gentle
touch and massage with pleasant aromas and nice music and allowing
her to rest when she needs to has helped her general well being
immensely.
So things are looking good at the
moment.
Even as I write that I get a
funny feeling in my tummy like I don’t want to jinx myself! I’m
scared to feel too content and happy because another major hurdle
could be just around the corner for Billee.
I do know that even if it is
Billee will approach it with her usual strength and fighting spirit
and we will overcome it together.
God gave us this precious little
girl because he knew we would have the strength to care for her and
do the very best we can for her and that is what we are doing each
and every day of this journey.......


19thMarch
Billee had another stay in
hospital this month but fortunately it was only a very short
one.
She had an ear infection
and high temperature which then caused her breathing to become fast
and erratic.
Thankfully she is
recovering at home now.
Other than that she has
remained very alert and is still responding nicely to
us.
There has been no seizure
activity since around June last year which is a massive
plus.
We have started to decrease
one of her medications and will continue to do so over the next
few
months so we pray that the
seizures stay away.
She is still on the
ketogenic diet and is taking all of her feeds through her feeding
button in her
tummy.
The movie night fundraiser
that we held last week was hugely successful.
We raised just over $3700
and would like to say a massive thank you to the following
individuals and
businesses for their
donations and support:
- * Every one that attended
on the night bought raffle tickets and helped to make the night
such a success.
- * Cories Hair
Escape
- * Star shots at
Miranda
- * Pampered at Carrs
Park
- * Cronulla’s Head
Gardeners
- * Mia
Fish
- * Cronulla
Cinemas
- * Hillsong Church
Group
Most of all I would like to
thank my very good friend Vickie Riley who organised the whole
event.
This is the third
fundraiser that Vickie has organised for Billee and I hate to think
where Billee would be without her.
I have known Vickie for
around 20 years and she has been a great support from the start of
this journey and is turning into quite the fundraising
queen!
Sometimes with
appointments, hospital stays, therapies and just general life with
a special needs child knowing that I also have to fundraise to make
it possible for Billee to be able to keep going with it all is just
so overwhelming but knowing I have the support of Vickie and all of
my other friends and of course our families makes it that little
bit easier.
- * Thank you also to Jane
for your help selling tickets and Jodie, Ashleigh, Sue and
Rebecca.
- * Nicola for designing the
flyers and tickets.
- * Also this month I would
like to mention CBINE Hair salon and thank them for their
support.
(They have a
donation tin in the salon and the girls and their clients helped
raise just under $250!)
- * Uncle Pete’s Toys in
Castle Hill, Brookvale and Manly Vale for your ongoing donations
and support.
- * How Bizarre Hair Salon
for selling boxes of cards and many donations.
- * Bobbi & Tony Conway
for their ongoing support and assistance because without them
Billee wouldn't have this website and I wouldn’t have this platform
to reach out to so many people that has opened many other doors for
Billee. (We love you soooooo much guys and will never be able to
thank you enough XXX)
- * Also while I’m thanking
people I would like to mention my 2 closest friends the 2
Nays!
"You are both always
there..... You encourage me when I’m excited and hopeful and cry
with me when I’m sad and frightened. You have both become such
experts in Lissencephaly and that in itself just shows how much you
love Billee. I know you would do anything for us and I also know
what a huge inspiration Billee is to you. You are a massive support
and I couldn’t ask for more amazing friends. Love you both
XXX"
- * Also thank you to Quilts
4 kids (www.quilts4kids.com) for the beautiful quilt they made for
Billee. The quilt is very special as women from different corners
of the world each sewed a square and then pieced it all together.
The women all knew Billee’s story and chose to sew for her. I am so
touched by what a loving and kind gift this is from such special
people. If you want to see Billee visit their website and follow
links to children of 2010 and then to Billee.
If you know of a seriously
ill child who would like a quilt made simply e mail them. We have
taken Billee’s quilt into hospital twice already and have had so
many wonderful comments about it.
We have started a new
therapy with Billee called MAPS (www.unlimitedbrain.com).
I really don’t want to say
too much about it just yet but the founder of this programme has
very high hopes that we will see some very significant improvements
in Billee’s development so watch this
space..............
We pray that Billee keeps seizure
free and we pray that she keeps improving and thank you all for
reading my updates and supporting my baby girl in her fight with
this awful condition.....

19th
February
Unfortunately Billee is in the
hospital at the moment so this update will be short as I need to
get back up to her soon.
She has a viral infection in her
throat which has triggered asthma.
For the past 2 days her breathing
has been very fast and she has required oxygen
constantly.
She also has had a temperature
and a very sore sounding throat.
When I left the hospital a couple
of hours ago the nurse had turned her oxygen off to see if she
would cope without it so hopefully she is turning a
corner.
Otherwise she has had a pretty
good month.
The skin tag around her peg is
still there and we have been advised to leave it for a while now
and see if it settles itself down.
The ketogenic diet is still going
well and we will begin to decrease Billee’s meds next
month.
We were going to try her back on
solids this week but her throat was so bad she was unable to
swallow her saliva so we have had to suction her
instead.
Not a good time to introduce food
into her mouth!!
Glenn and I have been asked to
talk at a Gastrostomy seminar next month to parents of children
thinking of getting a feeding tube.
Those of you that know me will
know that public speaking has never been my favourite thing but I
have had to face my fear a few times now at fundraisers so
hopefully it will all go well.
Thank you to everyone who bought
cards and to those of you that are waiting I will have more very
soon.
We have organised another movie
night at Cronulla cinemas on Thursday 11th March.
The movie is called ‘The Blind
Side’ and stars Sandra Bullock.
Tickets are only $20 and it
promises to be a great night with a lucky door prize, a raffle and
a chance to support Billee and help us to raise as much money as
possible for her.
Please contact me asap for
tickets.
We had a harsh reminder this
month how quickly things can change for the worse with
Lissencephaly but on the other hand I have a positive as
well.
Jayden, a beautiful little
boy with liss, the same age as Billee whose father I have become
friends with sat up for the first time unassisted for 30 seconds
this week.
A small accomplishment for some,
but a massive milestone for Jayden and his family.
Well done
Jayden!
Let’s hope we too are celebrating
a similar milestone for Billee soon.
P.S. I just spoke to Glenn’s Mum
at the hospital and they have turned Billee’s oxygen back
on......Aaaargh....

19th January
2010
I had a dream last night and in
it Billee was walking and babbling like a ‘normal healthy’ 2 year
old does (to my Auntie Pat!).
When I woke up for a split second
I felt content and then I very soon realised that it was just a
dream.......
Unfortunately Billee has had a
bit of a rough start to the New Year.
Since she had the surgery for her
feeding button it had been healing quite nicely except for a small
skin tag on one side.
After trying various creams we
were having no luck in removing the skin tag and it kept
bleeding.
Billee then had silver nitrate to
try and burn it off but unfortunately it burnt the skin around the
button pretty badly.
She had to have the button
removed and a tube put into her stomach so that the burnt area
could
be treated.

It is looking a lot better now
but after all of this the skin tag is still there so we are going
back to hospital on Friday to try to remove it another
way!
She is still very alert and quite
happy in herself despite the pain she was obviously in.
Billee has been on the ketogenic
diet now for almost 3 months and very soon we will start decreasing
one of the drugs she is on.
So far we haven’t seen any signs
of seizure activity but the real test will be as she is weaned off
the drugs so fingers crossed.
I feel like we have taken a step
backwards in Billee’s day to day therapy in the last couple of
months due to her surgery, starting the new diet and now her burn
so I am really looking forward to getting back on track very
soon.
This involves –
- The programme from AIAHP
covering vision, tactile, intellectual, respiratory and
balance.
- ABR which is her physical
programme.
- A sensory programme put together
by Billee’s speech therapist building towards introducing food and
taste back into her life.
- A vision programme put together
by Billee’s fantastic visual aid and carried out by us at
home.
Also we will be starting a
communication programme with the hope of improving Billee’s general
awareness and ability to communicate with us.
As you can see we are in for a
very busy year and we are praying with all this intervention that
we will soon see more positive results in Billee’s
development.
Before all of this we are going
on holiday for a week to sit and relax around the pool and recharge
our batteries!
Just after Christmas we received
some funding from The Australian Genies foundation and were able to
buy the high / low base that goes with her new stroller.
The idea is that the base is used
in the house as a high chair but you need to take the seat part off
the stroller to do so.
Thankfully a wonderful family
called the Bretts had an old stroller the same as Billee’s
and they gave it to us so we were able to make use of the
seat.
We now not only have her new
stroller and base but we don’t have to keep taking the seat in and
out of the car!
We would like to say a huge thank
you to Kylie and Rob Brett and to their son Noah who is a beautiful
6 year old little boy with very severe cerebral palsy.
Noah spends a lot of time in the
hospital and he is back in there at the moment so please say a
special prayer for him and his family.
We had a very nice Christmas even
though it was pretty overcast!
A few days before Christmas Glenn
was getting his hair cut and he was telling Jo, the lady cutting it
about Billee.
She was moved to tears and told
Glenn she was part of a church group called Hillsong and asked to
meet BIllee.
She asked if she could come over
on Christmas Eve and when she arrived she gave us a cash donation
for Billee, food hamper, toys for the girls and a Wii game console
for the whole family! She even made some pasta for our
dinner!
We were totally blown away by
this amazingly kind gesture from her and her friends and it made us
realise once again just how generous and compassionate people can
be, especially strangers.
We would like to say a massive
thank you to Jo and all her friends at the Hillsong church
group.
We would like to thank everyone
that sent cheques or donated over the website.
We would also like to thank Uncle
Petes Toys in Manly Vale, Castle Hill & Brookvale and their
customers.
We are hoping to organise another
movie night in February / March. The last one was very successful
and I know was enjoyed by all of you that attended.
I will send out an e mail to
everyone local as soon as we have a date.
I am also ordering some more
boxes of greeting cards. These too were very popular but
unfortunately they are only available to those of you that live
close by.
They are $26 for a keepsake box
of 30 cards. (Pictures of the cards are on the home page of
Billee’s website)
Also please keep in mind we will
be starting another Cadburys chocolate drive in March which again
was very successful last year.
As you can see after a break from
fundraising we really need to get back into it to raise some money
to pay for the next ABR clinic in April 2010.
Any help would be greatly
welcomed and appreciated.
Once again my family and I would
like to extend our ongoing thanks for the support and encouragement
that we receive constantly from so many of you.
Not only from donations and
organising fundraisers, although this is what makes us able to pay
for Billee’s medical and therapy costs but also for providing us
with Billee’s website, cooking us dinner and minding our
girls.
Where would we
be without you?................

Please follow link below for
updated photos:
http://www.beautifulbillee.com.au/photo-gallery/christmas-2009
19th
December
Unfortunately Billee has been
sick for the past 2 weeks.
It started off with a sore throat
and a throat swab that came back none bacterial and then progressed
to temperatures of nearly 40 degrees and a blotchy rash over her
body.
Turns out my poor baby girl has
tonsillitis and an ear infection.
Her breathing has also been very
wet and gurgly sounding and Glenn has had to suction her secretions
the past 3 nights.
She is now on antibiotics which
hopefully will clear it all up by Christmas.
Having said this she is still
very alert and aware.
Her feeding ‘peg’ still hasn’t
healed up completely and she might have to have a slightly longer
one inserted as she has put on a bit of weight lately.
Although Billee has been coping
quite well on the ketogenic diet and has had no seizure activity,
she has had a couple of vomits (one emergency department dash) and
it seems she may have reflux.
We are continuing with the diet
and will hopefully start decreasing her medication in
February.
Billee recently got 2 new
fantastic pieces of equipment.
The first one is a table
organised by her amazing visual aid (Ana) and made by one of the
technicians at the Royal Institute for Deaf and Blind
children.
It is to be used with her special
tomato chair and can have all sorts of things placed or hung from
it at an easy to reach distance.

The other is called a
Hopsa Dress and is Billee’s Christmas present from both sets of
grandparents and her Uncle Gary & Auntie Katy.
 
With this we can put various
textures under her feet for her to feel and hopefully encourage her
to weight bear a little more.
Billee was measured up for a bike
last month but unfortunately she was still a little too small so we
will go back and try again around March time.
Thank you to all of you that
donated over the internet and sent cheques this month.
Thank you also to my cousin Lynne
who did a sponsored run and to all her friends who made
donations.
Also thank you to my cousin Nick
who held a fundraising football game and to all his friends for
their donations.
We have our next ABR training
clinic in March and then Billee has her AIAHP assessment and
training also in March so these donations will help us to pay for
all of it.
I wanted to tell you about a very
sad and shocking story that emphasises just how unpredictable and
devastating lissencephaly can be.
A family I am in contact with in
America had a little boy the same age as Billee who seemed to have
been progressing at about the same pace as her.
He was the youngest of 4 boys and
his mother is a really lovely lady.
Last week his mum gave him his
lunch (he is tube fed like Billee) and put him down for his
nap.
When she went in to check on him
he wasn’t breathing, he had aspirated his milk and
drowned.
The news of his passing
completely shocked and saddened me.
Not only am I devastated for his
poor family but it made me realise that our little liss babies
don’t even have to be sick to leave us.
Please say a special prayer for
his family as they face a heartbreaking Christmas without
him.
Thank you all for your continuous
support and words of encouragement this year.
Billee health has improved since
this time last year and I believe she has developed more even if it
has been a slow process.
This wouldn’t have been possible
if it wasn’t for your continued support and help with fundraising
and donations.
Billee is smiling more, laughing
more and moving around more.
So thank you, thank you, thank
you...........
We wish you all a very Merry
Christmas and Happy and safe New Year.
XXXXXXXXX

19th
November
We have had another busy
month!
First of all Billee got her new
stroller.
We were very excited about this
as it means that we can now take her out and about and she is
positioned correctly and can see the world around her (I will add
photos soon).
Most of this was funded for us
and for this we would like to thank the very hard work of Billee’s
occupational therapist – Melissa.
Also another foundation
approached us to fund the other half of this seating system which
is a base to use indoors.
We are waiting to hear from them
but are very hopeful that this will be approved shortly.
Billee started the ketogenic diet
last week.
The ketogenic diet is a special
diet that is very high in fat and low in carbohydrates used to help
control seizures and improve awareness in children that suffer from
seizures.
The idea is that instead of the
body using glucose for energy it uses ketos and by doing this
seizures quite often improve.
As Billee is getting all of her
food and fluid through the button in her tummy at the moment the
diet has been very easy for us to manage.
She had to spend last week in the
Childrens Hospital so that her blood sugar and keto levels could be
monitored and also for us to get her feeding regime
clarified.
Even though it has proved easy
for us to manage the amounts of ketocal (the formula) have to be
exact and feeding times very strict.
She is coping very well so far
and her awareness is improving all the time.
This month I would like to thank
the following people:
- * Uncle Pete’s Toys in
Brookvale, Manly Vale and Castle Hill and all of their very
generous customers for buying cards, chocolates and
donations.
- * How Bizarre hair salon in Sans
Souci and all their very generous customers for their
donations.
- * Everyone who sent cheques and
donated via the website.
Thankfully Billee has managed to
stay healthy through the winter months and we are now well on our
way to a beautiful Aussie summer.
We have stopped her asthma
inhalers (we usually do in summer) and she is doing great without
them.
Since having the feeding peg put
in her tummy she has been so much healthier and aware of us and her
surroundings.
My only issue at the moment is I
feel very frustrated that I’m not doing enough therapy.
Since having the surgery for the
peg and starting the keto diet I have had to cut back on therapy to
give Billee’s body time to recover and adapt.
Even though I know this is very
important it is frustrating as you feel like you should be doing
more!
Now that the lovely weather is
here I also feel that it is important that Billee be included in
everyday activities with our other girls.
So it is a very hard balance but
one that I have no doubt that we will achieve and slip back into
very soon.
I am also looking into getting
Billee a bike adapted for her needs.
A friend in the USA has a
fantastic bike for her son who has lissencephaly which was made by
a company in Canada called freedom concepts (www.freedomconcepts.com
).
They have a mini version for age
1 and up that I am in the process of making enquiries about. I
think it would be fantastic for Billee to be able to ride alongside
her sisters (with me or her Dad pushing of course).
Anyway watch this
space!!
We are still very interested in
doing G Therapy that I mentioned a couple of months ago but we have
decided to give the keto diet a go first.
We thought it would be a bad idea
to try them both at the same time as we would never know which one
was doing any good.
Please keep Billee in your
prayers.
As you can see she is improving
slowly but any improvement no matter how small is massive to
us.

12th November
I am writing this from Billee's
bedside at the childrens hospital as Billee started the ketogenic
diet 3 days ago.
The ketogenic diet is a special
diet very high in fat and low in carbohydrates that can help with
seizure control.
As it is so high in fat we have
to spend a week in hospital so that Billee's blood sugar levels can
be monitored along with a couple of other things.
Any way so far so
good!!
She is going very well and we are
hoping to be home tomorrow or Saturday.
Please keep her in your
prayers.
Thank you.......
19th
October
Two years ago today I sat in a
hospital bed proudly showing off my brand new perfectly healthy (so
we thought) baby girl.
I am so thankful that we didn’t
find out about Billee’s liss until she was 6 months as that day
could’ve been so different.
Instead I thank God that I was
able to enjoy all those normal feelings of joy, elation and fear
(that I now have 3 kids!!) and that I was able to bond with my
precious baby girl just as I had with her 2 sisters.
Who knows how I would’ve felt had
I known that my perfect little baby in fact had a very serious and
severe brain injury.
If I knew then what I knew 6
months later I don’t think I would’ve ever been able to get out of
that hospital bed.
Things obviously happen in
certain ways for a reason.........
Any way yes.....
Billee is 2 today!!! Happy
Birthday beautiful girl!!

We were due to have
Billee’s birthday party yesterday but we had to reschedule it to
next Sunday as she is recovering from surgery.
Yes we have had a
busy month!
After having the NG feeding tube
put in we felt that just having enough food, being completely
hydrated and getting all of her vitamins made a huge improvement to
Billee’s health.
The only problem was she still
wasn’t swallowing her food and having a tube down her throat didn’t
help.
So we made the very hard and
painful decision that nobody wants to have to make for their child,
to have a feeding button put into Billee’s stomach.
For the past 12 months we had
been fighting against this but to be fair Billee has never had the
correct amount of fluids, hates the taste of her vitamins and meds
and most recently fought with her solids.
We saw the surgeon last Monday
and he did the operation on Tuesday (he had obviously been pre
warned about us and what we are like when we decide we want
something for Billee!!)
Initially he said that Billee
would need to stay in intensive care for 2 nights.
After taking a little longer than
we would’ve liked to come around from the general anaesthetic, she
was amazing she didn’t even go to ICU!
Six days on and she is still
doing really well.
We are hoping as time goes by she
will start to eat pureed solids orally again but for now she is
getting everything through the button.

Billee’s neurologist
is very keen to get her started on the ketogenic diet with the aim
to hopefully gain more seizure control and improve her awareness
and development.
We met with the team at the
childrens hospital last week and it looks like she will go into the
hospital for 5 days mid November to start the diet.
Apparently there is a long
waiting list for the diet but because Billee has such an amazing
neurologist she has been zoomed to the top!
Also this month Billee had her
assessment by Chad from AIAHP.
He saw huge improvements in
Billee’s awareness, responsiveness and vision!
The website has been up and
running for almost 1 year now and we really wanted to say a massive
thank you to you all for your constant help and support.
Due to your donations and
fundraising we have been able to do the following for
Billee:
-
Attend two ABR training clinics.
-
Hire the ABR machine for 8 months.
-
Train with the AIAHP and have 2 further assessments.
-
Pay for medicines, vitamins and hiring of medical
equipment.
-
Buy a wingbo to help with her head control.
-
Buy a portable suction machine to reduce the risk of aspiration
when she has a cough.
We will also be attending an ABR
training clinic and AIAHP assessment in March 2010.
This is obviously a fantastic
achievement that wouldn’t have been possible without all of the
people I have thanked over the last 12 months!
Thank you all once
again!
Unfortunately we need to keep
paying for these things for the foreseeable future so please,
please, please keep fundraising and donating.......
We are also still hoping for some
funding to pay for the Jazz Easys stroller that Billee
needs.
We appreciate your kindness,
compassion and generosity more than any of you can imagine.
Most importantly we are seeing
improvements in Billee’s vision, awareness, responsiveness,
strength and general health.
Her latest achievement is that
she is starting to use her hands a little more by reaching out and
even grabbing hold of her own feet.
Also when she is lying on her
back she has started to push her feet down flat on the floor,
lifting her bum up in the air!
I know most of you are probably
thinking that doesn’t sound like much but it’s these tiniest little
improvements that we live in hope for.
All in all we have had a very
busy, emotional month with many ups and downs.
For now we are focusing on our
beautiful little girls 2nd birthday and celebrating her
abilities not worrying about her disabilities because as far as we
are concerned she has so many more abilities to come.

29th September
Our baby has had the NG tube put
in.......

But she is doing
well and looks healthier already.
22nd September
 
Billee’s occupational therapist
came over today with a rep and 3 special needs
strollers.
Up until now I have kind of been
in denial that Billee needed a special needs stroller and wanted to
keep her ‘normal’ peg perego for as long as possible. But recently
we have got to the point where she is very uncomfortable and badly
positioned in it.
We wanted to find one as ‘normal’
and non disabled looking as possible and we came to the conclusion
that the the Thomashilfen Jazz EASyS stroller fitted the bill while
also having the best support for Billee.
The price of the stroller on its
own is$6000 and then there are extras you can
purchase like a tray and a different base to transform it into a
high chair.
We have enough money from our
recent fundraising to pay for Billee’s therapy costs up until early
2010 and we need to keep this money for that purpose.
We wouldn’t even consider
stopping her therapy programmes obviously.
Therefore we need to raise the
money for the stroller.
If any of you would like to help
us to raise this money by either fundraising or donating towards it
we would be eternally grateful.
Thank you to the people who sent
the $500 cheque and donated the $100 through the
website.
This has started the ball rolling
and puts our total so far at $600.
Please help us to reach
our$6000 goal.
Thank you all very
much
Kerri
19th
September
Billee has been having both a
good and bad time this month.
As far as seizures go she has
been great with no activity to report.
She has also been very alert and
responsive and her vision has improved.
Unfortunately she has been having
problems with eating and swallowing. Food has been the
biggest problem but she has also been quite gurgly and struggling a
bit with her milk. We started her on Pediasure yesterday to help to
keep her calorie intake up and we are going to discuss things with
her paediatrician next week (hopefully).
We are thinking she may need to
have a temporary nasal feeding tube just to see her through for a
couple of weeks. She has also had a very chesty cough for about 4
weeks now which obviously has something to do with it and she is
back on the ventolin and flixotide inhalers.
Even though we have always fought
not to have her tube fed we feel that it may be the way
(temporarily)to go. I believe we can still feed her orally
and would continue to do so when she is willing to. I feel that she
is very lethargic and basically not very happy.
Oh who knows what will happen? It
is all very worrying and confusing and reminds us that if it’s not
one thing it’s another with this horrible lissencephaly.
On a more positive note Billee
had an annual visual assessment on Wednesday and we were very happy
with the results.
Rosa (the orthoptist ) told us
last time she saw Billee that her vision was 6/90 which means that
what we see at 90 metres she sees at 6 metres.
This time Rosa said she had
improved to 6/60 with the official tests but in her opinion
probably more like 6/45 as she was tired close to the end but
could’ve even done a little better.
She said Billee definitely has
the visual skills and can look from one object to another and back
again to the first with no problems. She also has no problems
moving her eyes without having to move her head which is fantastic
as most children with cortical visual impairment find this
difficult to do.
Also this month we met with
Billee’s occupational therapist to discuss options for her stroller
as she is in need of something with better support.
I was hoping we might have been
able to add some supports to her current peg perego stroller but it
seems instead we need to look into a special needs pram.
Melissa is coming back next week
with a rep to show us 2 different types.
They are both very pricey (over
$5000) so we are hoping that somebody might help us to fund this
for her or if any of you want to donate something towards it for
Billee's birthday next month that would be great.
This month I would like to thank
from the bottom of my heart 4 amazing ladies who organised
‘Billee’s Bogan Bingo’ fundraiser last Saturday night.
-
Vicki Riley and Jane Campbell – Horn who I used to work with 20
years ago and have remained friends with since.
*From the moment I
told Vicki the devastating news about Billee’s Lissencephaly she
took it upon herself to be our fundraising QUEEN!*
-
Heidi O’Shannessy & Jane Wood who helped Vic with the
organisation, selling of tickets and printing of the posters
and tickets.
THANK
YOU.....THANK YOU....THANK YOU......
Please follow the link below to
see photos taken on the night:
http://www.beautifulbillee.com.au/fundraising-updated-pic/bogan-bingo-night
Thank you to all of you that
attended and I hope you all had a great night whilst helping to
raise
just over
$5500!!
This money will be used to help
pay for Billee’s therapies including the AIAHP programme and ABR
and will hopefully see us through to early 2010.
Also thank you to all the
individuals and businesses listed below for their very kind
donations and support:
-
Don Wood Photography especially Jane & Bindy
-
Uncle Pete’s Toys
-
How Bizarre Hair Salon
-
Louise Blake @ Emma Page Jewellery
-
Babies Galore @
Taren Point
-
Nicole Deacon @ Adshel
-
Kate & Craig @ Riviera Dance Company
-
Suzie Photiou Property Consulting
-
Nikki Gilmore @ McGrath Real estate
-
Claire @ Pampered at Carrs Park Beauticians
-
Mel & Paul @ Starting Blocks Swimming school
-
Liz & Tim @ Head Gardeners Hair Salon
-
Curves Gym @ Sylvania
-
Make Cents Fundraising
-
Sage hair Salon
-
Sutherland United Service mans Club
-
Future Cutz Hair Salon
-
Little Italy @ Engadine
-
Civic Video @ Engadine
-
Nicola O’Ryan Smitz
-
Jane & Kev @ CBR
-
Corey Pearson @ Sports Bet
-
AJ & PM Wholesale Electricals
-
Vinny for the Harley ride
-
Sam @ Cbine Hairdressing
-
Sheree Geddes
We would also like to say a huge
thank you not only to our fantastic families (where would we be
without you?)but also to:
-
our ‘besties’ Renee and Dane for their continued love,
support, understanding and enthusiasm not only this month but every
day for the last 18 months and to my other Rene who is equally as
amazing and supportive and who is always there for me.
Please keep Billee in your
prayers especially why we find a solution to her feeding worries.
We just pray that the drugs keep the seizures controlled and that
her development continues to improve.
Can I just say to all my family
and friends in England I will e mail you all individually soon.
I’ve been meaning to catch up with you all for ages and fill you in
on how we are all going but there just never seems to be enough
time in the day! Sorry.
Thank you all for your ongoing
love and support and please keep thinking of ways to help with
fundraising.
Please every one remember that
Billee is our baby girl and we struggle every day of our lives not
only to provide her with the therapy programmes she needs in the
hope that she may make even the slightest improvement but
also to provide her with the basic normal every day things that you
completely take for granted when you have a healthy
child.
Like worrying that she has had
enough fluids and that she has eaten enough food in the day and
battling to get 3 different anti convulsant drugs into her because
if we can't the likelihood of her seizing is just too great and
what could happen as a result of it too terrifying.
For the most part people do
realise and understand what we are all going through and how it
impacts not only Glenn and I but also our other children and
Billee's grandparents lives.
But I do think that there are a
small amount of people that just don't get it. Maybe they can't get
it or maybe they just don't want to open there eyes and their
hearts and feel for just one second how they would've felt if this
would've happened to them and their baby.
Isn't she just so precious and
beautiful...............

19th August
Billee has been having a pretty
good month up until today!
She finished the course of
steroids and we gradually saw her ‘come back to us’ both visually
and responsively.
Keppra has been added to keep the
seizures at bay and along with epilim and lamictal it seems to be
doing the trick.
With the exception of one chesty
viral infection she has managed to fight off any major illnesses
and hospital stays this winter so far.
Having said this she has woken up
this morning with a temperature and has been coughing quite a
bit.
She has also gone off her food so
I think she may be coming down with something. One of her sisters
has been coughing like mad for the last few days so hopefully it is
just something she has picked up from her and nothing to do with
aspiration.
Last night Billee had a little
seizure whilst I was holding her which is the first bit of seizure
activity we’ve seen all month and I’m hoping this is also due to
her coming down with something and not the dreaded hypsarrhythmia
back again.
So for now we just hold our
breath and tread water and pray she will be ok!
We have been looking into a
couple more treatments in the last 2 weeks. G Therapy is one of
them and hyperbaric oxygen therapy (HBOT) is the other. I will
update everyone as soon as we know more.
Billee had her yearly heart check
up last week.
As most of you know when we got
our genetic blood test results back last year they found that
Billee had a deletion around the Miller Deiker region.
Miller Deiker is a syndrome which
normally presents with a slightly worse case of Lissencephaly than
Isolated Lissencephaly and is usually accompanied by defects to
major organs.
Therefore Billee had her heart
and kidneys checked. The results showed no defects to either organ
and as a result the diagnosis of Isolated Lissencephaly was
confirmed.
What the heart ultrasound did
show though was something called a PDA. This is a tiny valve around
Billee’s heart that hasn’t closed up yet. Apparently most babies
close at birth but some stay open a little longer and unless your
child had an ultrasound you would never know and it would close
over time.
The specialist told us that he
thought it was still open but there were no obvious signs to
indicate that it was any bigger.
He couldn’t get a good enough
look at the area because Billee was screaming and her lung was
inflating and getting in his way! (We had been there for about 2
hours by this time and I was nearly screaming too!!!)
So he suggested we make another
appointment in a month or two and we decided we would make it at
9am as this was his first appointment and he wouldn’t be running an
hour late by then!!
Thank you to everyone who donated
on the website this month.
Thank you also to Glen Tomlinson
for his generous donation.
I also want to remind everyone
who lives in our area that we still have a few tickets available
for ‘Bogan Bingo’.
It's on Saturday 12th
September at Jannali pub and it promises to be a great night. I’ve
been to a bogan bingo fundraiser before and it’s such a
laugh!
The guys that run the show are
fantastic and organise heaps of fun and games on the
night!
We are trying to get as many
prizes as possible so that no one goes home empty handed so if you
can’t come but would like to donate a prize please e mail me
asap.
Once again thank you everybody
for all your support and words of enthusiasm.
Billee is improving visually,
cognitively and physically and this is only made possible by the
generous donations and fundraising by you.
YOU are helping to make a
difference to Billee’s development – please keep it up!


Big sisters and
cousin!
20th July
Billee has had a pretty rough
month unfortunately.
After having an EEG that showed a
modified hypsarrhythmic pattern she started on a very high dose of
prednisolene (steroid treatment).
For the first 2 weeks she seemed
to be coping well and her vision and alertness were still pretty
good.
The seizures stopped after a few
days and have stayed away which is fantastic.
Unfortunately the last 2 weeks
haven’t been so good. Billee has become a lot less responsive and
alert and her vision has been affected. She isn’t making eye
contact at the moment or fixing and following objects.
She is also having problems
swallowing her food and milk. She is good at breakfast when she
eats 2 weet bix with milk but deteriorates as the day goes on. She
is handling thickened water better than milk so we are keeping her
fluids up using this.
We finished the prednisolene
yesterday so hopefully in the next few days things will start to
improve.
We have also on the advice of
Billee’s neurologist started her on a very low dose of Keppra. The
aim is in 6 weeks to start decreasing the Epilim so eventually she
is still only on 2 medications.
Hopefully this will prevent the
hypsarrhythmia and seizures returning.
We are still doing her therapy
programmes but have had winter school holidays here in Australia so
Billee has also been spending time playing with her sisters and
cousins which is great stimulation for her!
We would like to thank the
following people for their support this month with
fundraising:
•
Julie and her staff at How Bizarre Hair Salon for selling boxes of
cards and their customers for buying them and also
donating.
•
Uncle Pete’s Toys for taking over 50 boxes of cards.
•
Everyone else who have been helping to sell the cards.
•
Tony & Bobbi for their ongoing support with the website
etc..
•
Everyone who helped to raise nearly $700 at our garage
sale.
•
The couple who came to our house the day before and donated some
items.
•
A very kind couple called Christine and Ross who came to the garage
sale and then went on to organise 2 wonderful donations. Firstly
from ‘The Frank Vickery Auxiliary’ and then from ‘The second Chance
Opportunity shop in
Gymea.’ Thank you all very
much
Also to every body who has
donated by sending cheques or via the website.
Billee has a standing frame on
loan at the moment and we are trying to give her 10 minutes a day
in it to help her weight bearing. We have put in an application for
funding for one so fingers crossed.
It has been really hard seeing
Billee so unresponsive especially with her not making eye contact
with us. Even though this is the third time she has been on the
steroids it is heart breaking to see her 2 sisters trying so hard
to get her to look and respond to them.
We are just praying that soon we
will have her back and we can keep going on this journey and
hopefully she will make some more gains in her development before
the next bump in the road.
She is asleep on my lap at the
moment as I type this and just looking at her beautiful perfect
little face makes me so proud to be her Mum and fills my heart with
such unconditional love for her.
Billee is the strongest, bravest
and most precious little angel and we are grateful every day of her
life to be blessed with her........

Billee in her
stander with her sisters and cousins

23rd June
For the past few days Billee has
started having seizures again.
She had an EEG this morning and
unfortunately it showed the same hypsarrhythmia pattern as back in
February.
This means that she is back on
the steroid treatment (prednisone) and is very sleepy.
Please pray that she improves
quickly.

19th June
Billee has had another pretty
good month I’m pleased to say. So far she seems to have avoided any
chest and breathing problems and has just had a cold and snotty
nose! (Which is really not surprising considering how cold it has
turned lately)?
I am so proud to report that
Billee now says 'MUM' very clearly.
Of course she never says it when
we’re out and I want her to but she says it at home all the
time!
Whether or not she actually knows
she is calling me is not clear but I'm happy to go with
it!
In the last few days we have had
ABR training and Billee's assessment.
I have to say even though Glenn
and I weren't expecting too much just yet we were pleasantly
surprised with what Sarah (trainer) had to say.
In her initial assessment Leonid
had pointed out that Billee’s chest was tilting upwards towards her
neck and as a result her diaphragm and abdomen were compressed
which was also affecting the position of her pelvis.
Sarah was able to point out (in
photos) that her chest and abdomen were actually beginning to
separate.
Her chest is also not tilting as
far upwards and her back neck muscle is not as tight, enabling her
to have a little more head movement.
Her neck and jaw line were also
more visible and her frogs like legs were a little less froglike,
meaning that her pelvis has improved slightly aswell.
All these things are very small
and only at the beginning stages and definitely won't affect Billee
in a functional way yet but for us they are huge.
It means that ABR is definitely
helping Billee and all our hard work is slowly starting to pay
off.
As I was reminded by one of the
more experienced parents, ABR is a marathon not a sprint but at
least we are off the starting block!
We had the opportunity to catch
up with Bethany and her parents again and we also met another
family.
Marcus is 7 years old, has
cerebral palsy and is the most amazing little boy I have ever
met.
His Mum and Dad have been working
with him constantly doing a programme from IAHP and ABR and what he
has achieved is fantastic.
Marcus is unable to talk but he
is extremely intelligent and can read. Even though he has delays in
his motor skills he is able (by using a piece of paper with the
alphabet on it) to spell any word he needs to by pointing to the
letters thus being able to communicate with his mum who then relays
it to everyone else.
Glenn and I were totally in awe
of Marcus and his mum. Not only is he incredibly smart he is also a
lovely person who was even giving us messages regarding what we
should be doing with Billee!!
It made Glenn and I realise that
anything is possible for these extra special kids and our hope for
Billee just soared.
This month I would like to thank
the following people:
•
Billee's Uncle Lee who organised a very successful fundraising golf
day at Elstree Golf club. Also Ray Wilkins, Terry Burden, Dean
Cottrell, Ray Daniels, Glenn Tomlinson and John Baird for all your
help and support.
•
Thank you to those of you that helped raise a massive £1300 by
playing on the day, buying raffle tickets and making donations. You
are all amazing!
•
Julie and all her staff and clients at How Bizarre Hair Salon in
Sans Souci for their continuous donations and help in selling
chocolates and now boxes of greeting cards.
•
Mick for selling items on e bay and donating all the money to
Billee.
•
My godparents (Keith & Sue) who made a very large donation and
also their daughter Maria for passing Billee's story on to a friend
at chanel 7.
•
My Auntie and Uncle (Aileen & Alan) for their very generous
donation.
•
To everybody that donated via the website and sent
cheques.
We are
currently selling boxes of greeting cards for our next
fundraiser.
They are beautifully designed and
fantastic value at just $26
for a box of 30 (less than $1
a card!) They even come individually wrapped and in a lovely
keepsake box.
I have posted pictures on
Billee’s home page and I can guarantee you will all love
them!
We are looking for people to take
a few boxes to sell to family, friends, work colleagues or the Mums
at school.
They are very popular and you
will have no problem selling them but I will of course take them
back if you do.
So please e mail me if you can
help.
Unfortunately I can't send
them so I can drop them to you or you can pick them up from
me.
Thank you all for your prayers,
positive messages and continuous concern.
Our journey is very often a
struggle but knowing we have the support and love of not only our
families and very good friends but also those of you that don't
know us very well but are always prepared to help out is a huge
relief.
Seeing Billee this alert,
babbling and moving as she is gives us all the reassurance we need
to know that we are doing the right things for her.
We also know how quick things can
change for children with lissencephaly so we are making the most of
these positive moments and simply enjoying having our precious
little girl.
Please visit the photo section of
the website for new pictures of Billee and check back very soon
when I would’ve updated the therapy section as well!

19thMay
I'm
relieved to say that Billee has been having a pretty good month so
far.
Thankfully she hasn't had any big seizures since last month,
only a couple of funny eye movements but nothing we are too
concerned about.
Both ABR
and AIAHP have been going great. We have some new exercises from
AIAHP which I will be including in a section very soon explaining
exactly what we do and why.
Billee
has been very alert and vocal lately and her vision seems to be
improving as well.
I truely
believe the programmes that we are doing with her are
helping.
We are
managing to get approx 2 – 3 hours of AIAHP most days and about the
same of ABR. With an extra 10 hours on the machine during the
night.
A lot of
very hard work and commitment but all very
worthwhile!
This
month has been a very successful one with fundraising and I have a
whole heap of people to thank.
-
* Mel
& Paul from Starting Blocks Swimming School and their customers
who raised money with face painting and balloon
making.
-
* Sally
Bradshaw for holding an Emma Page jewellery party and for those of
you that placed orders and Louise Blake for donating the
profits.
-
* Every
one who sent cheques and donated through the website, we had a very
generous donation from England this month which was
fantastic.
-
* The
May family for selling their childs motorbike and donating the
money to Billee.
I am
very pleased to report that we raised a massive $4160 at the movie
night on 7th May. I would like to thank the following
people:
-
* Vickie
Riley for organising the whole thing and Jane, Rebecca, Heidi and
Janine for their assistance in selling tickets.
-
*
Cronulla Cinemas for letting us hold the event there and giving us
such a good deal.
-
* Uncle
Petes Toys, Pampered at Carrs Park Beauticians and Louise Blake for
donating prizes for the raffle.
-
* Most
of all I want to thank all of you that bought tickets, donated
money and bought raffle tickets on the night.
Without all of your support and generosity we
couldn't have raised any where near the amount we
did.
The
money raised will pay for the next ABR clinic in June and also
Billee's next AIAHP assessment in September.
We still
have another ABR clinic this year in November and then Singapore in
March 2010.
As you
all know fundraising for Billee is constant and we are also still
looking into going to the US to the Napa therapy centre and also
stem cell treatment in China in the future.
The
positive results that we are seeing with Billee are what drives us
on and continues to give us hope.
Billee
was also very lucky to get a new chair this
month.
It's
called a special tomato chair and I've added a photo
below.
Its on
wheels so Billee's 2 sisters are able to play with her and interact
a lot more on her level.
Thank you very much for
this.
If you
are in England and live near Elstree Golf Club Lee (my
cousin) has organised a fundraiser golf tournament on Friday
5thJune.
For all
of you that are local please make a note on your calendar for
Saturday 12thSeptember. We are having a 'Bogan Bingo'
night at Jannali Pub and I will let you know as soon as tickets are
on sale.
Billee
is as beautiful as ever and is becoming a bit of a star – she has
been in our local newspaper twice lately!
Every
day with Billee is a blessing and we truly don't see her as
disabled, handicapped, brain damaged or any of the other labels put
on her.
To us
she is Billee our precious little baby girl!
We just
pray that the therapy continues to improve her development and that
the medication keeps the seizures at bay.
She is the light
of our lives!

21st
April
Billee came home on gate leave
(not fully discharged and able to go back without going through
emergency if needed) on Monday.
Honestly she is such a little
fighter!
After seeing her in the worst
state I've ever seen her on Saturday afternoon by Sunday she was
babbling and very alert again.
By Sunday night she was screaming
her head off in pain from her teeth! Yes teething!
I obviously hate seeing her in
pain but at least she is aware of her teeth hurting and alert
enough for it to be bothering her.
Those of you that really know
Billee will know that she very rarely cries especially screaming
and the nurses couldn't believe their ears!
Monday afternoon we were able to
meet up with the guys from AIAHP and we had Billee's re
assessment.
Even though Billee wasn't 100% on
form they could still see the improvements that we have been seeing
in her development.
She has made gains in every area
which only makes us even more determined to continue with the
programme.
They gave us some new things
to do in her programme and I will be adding a detailed explanation
of this in the therapy section very soon.
I really want to thank Billee's
paediatrician (you know who you are!) - for coming in and seeing
her on Saturday and Sunday even though you were on
holiday!
It means so much to us to know
that you genuinely care about Billee.
Also to the doctors and nurses in
recus on Saturday who helped Billee - you were all
amazing.
Finally last but not by any means
least - all the nurses on childrens ward.
We have built up a great
relationship with many of you and you always make us feel so
comfortable and very confident that Billee is getting the absolute
best care.
So our beautiful little girl
continues to amaze and inspire us with her fighting spirit and her
obvious determination.
Thank
you all for your prayers.....
19thApril
Unfortunatly I am
writing this update from Billee's bedside in the childrens ward at
our local hospital.
Yesterday was yet
another totally unexpected and shocking day in our lissencephaly
journey.
Billee had a
massive seizure lasting 30 minutes. She was unconsious, bit her
tongue and her whole body was convulsing.
Poor Glenn was
with her when it happened and I came home just before the ambulance
arrived.
She was rushed to
the emergency department and spent about 4 hours in recus where
they finally stopped the seizure and stabilised her
breathing.
The doctors and
nurses who worked on her were fantastic and we are very greatful to
them.
It appears she
has a chest infection and this as well as a temperature and just
generally being a bit under the weather could've triggered the
seizure.
As you can
imagine it was not something we had seen before and it really
scared us. Billee's biggest sister was with Glenn and she (as well
as Glenn) was amazing – we are very, very proud of
her.
Billee seems to
be doing well now and is only needing oxygen when she sleeps. We
are hoping to take her home very soon (fingers
crossed).
Well tomorrow is
Billee's reassessment with AIAHP. Not sure how this will go now we
are possibly going to do this in the hospital?
Will keep
everyone posted.
We have now
finished our chocolate drive and once again I want to thank every
one that helped to sell them.
Also a special
thanks to:
Please
don't forget upcoming fundraising events (if you are
local)
Wednesday
29thApril at 7pm – Emma Page jewellery party at Taren
Point Public School.
(All profits on
the night donated to beautifulbillee.com.au)
Thursday
7thMay – 'Ghosts of girlfriends past' premier movie
night at Cronulla Cinemas.
Tickets are $20
and there is a lucky door prize.
If you want
tickets but haven't got them yet please contact me asap
at info@beautifulbillee.com.au
I will update
again soon when we know more about Billee's current hospital
stay.
Please keep
her in your prayers.....
19thMarch
In 2 days time it will be
the 1stanniversary of what was undoubtably the worst day
of our lives.
The day Billee's
paediatrician told us that she has Lissencephaly.
It seems like only
yesterday that we sat in his office tears streaming down our faces
whilst we were told the severity of Billee's brain
disorder.
But in another sense it
seems like a life time ago that we had those feelings of total
hopelessness and fear of the unknown.
I really don't want to re
live that tragic time in our lives but I do want to emphasise that
what seemed like the end of our world was in fact the beginning of
a new world.
A world where no body wants
to go but some of us have to and when you get there its not at all
what you expected.
Its like joining a club
that no body wants to be part of but in fact the people who belong
to it are the most amazing, compasionate and supportive people I
have ever met.
In the past 12 months I
have researched and learnt probably more than I have in the last 20
years!
I have realised who my true
friends are and I have been overwhelmed by the ammount of support
and understanding that so many of you have shown.
I have become much more
comfortable than I ever imagined I would around children with brain
injuries.
I also feel so much more
capable and confident with Billee's seizures and giving medicines
etc..
I have realised that this
may not be the road we had planned to take but it is a journey that
I am sure we are all going to learn and grow from.
I have stopped asking why
this has happened and instead just feel thankful to have our
beautiful little girl.
We have been blessed with
the most precious gift in the world – our beautiful little
Billee.
Billee is finally coming
out of her drugged induced drowsiness and in 7 days she will be off
the prednisolene completely.
Hopefully then we will
start to see more of Billee's personality and alertness
returning.
We started our ABR training
a couple of weeks ago and it was great. Even though it was pretty
shocking to hear and see Leonid's assessment of Billee it made
total sense.
Our trainer was Jessie who
I have been in contact with for months. Jessie also has a daughter
with Lissencephaly and she has given us lots of helpful advice on
ABR, Institute programmes and other therapies.
I feel so positive that we
are doing the right thing starting ABR - I just feel like I really
'get it' and that fills me with confidence.
I will be adding a whole
section on ABR very soon explaining the concept and showing photos
taken during the training clinic.
We have recently started a
chocolate drive to raise money for Billee's next ABR clinic in June
and I want to thank all of you that took boxes to sell.
I would especially like to
thank the following people:
-
* Billee's auntie Jodie
(Glenn's sister) and uncle Justin, Ryan, Renee and Ash who sold a
massive 33 boxes in one night!
-
* Billee's auntie Toni
(Glenn's other sister) and uncle David, Alysse and Dom who sold 10
boxes and also collected donations.
-
* Felix, a 15 year old
guitar player and friend of Alysse (neice) raised $30 by busking
(we were very touched by this kind gesture)
-
* I also want to mention
and thank a very special lady called Barbara for giving up her time
to help me with Billee's AIAHP programme.
-
* Finally 2 of our nieces –
Danielle and Alysse who in the past month have both completed
projects for school about Billee and Lissencephaly in the hope it
will raise awareness of the disorder.
We hope that Billee will
improve and start interacting with us and her 2 sisters again very
soon. We are all missing her terribly. Please keep her in your
prayers........

This is Billee with her
friend Beth (who also has lissencephaly) on their way into ABR
training.
Beth's website is www.preciousbeth.org
6th March
I am very happy
to say that Billee had an EEG on Monday and it showed only 'minor
abnormalities' which means the hypsarrhythmia seems to have
gone.
The steroids
have worked.
Thank you all
for your prays and support at this difficult
time.
We are now in
the process of weaning Billee off the prednisolene but it is a very
long process and will take another few weeks. She has been very
drowsy and sleeping a lot lately and her vision has been effected
by the seizures and / or drugs.
It seems her
epilim levels were a little too high so this could be the cause of
the sleepiness.
But now
hopefully we are over this hump in the road and soon we will see
our little girl coming back to us.
We had the most
amazing eye opening experience last week when we started our ABR
training.
We listened to
Leonid (the inventor) speak in a 2 day seminar and then saw him for
Billee's assessment.
I will go into
lots more details in the monthly update but it just all made so
much sense. I really have a great feeling about ABR – I just really
'get it'.
Unfortunatly it
did end up costing us nearly $1500 more than we had raised so we
are now in even more desperate need to raise more money for the
next clinic in June.
It was
undoubtably the best money we have ever spent!
We are currently
having a chocolate drive so if there are any of you that would like
to buy a box or 2 please e mail me.
The cost of the
box is $57.60 and you can have either freddo frogs or caramello
koalas or I can mix a box for you.
There are 48 to
a box and sell for $1.20 each.
Obviously I
don't expect those of you that don't live close by to take any but
if you want to do your own chocolate drive please contact me for
the details – it is very easy and no money
upfront!
Thank you again
for all your prays for Billee – please keep them coming as they
seem to be working..........
19th February
Firstly I want to say a huge THANK YOU to every
one that sent e mails wishing Billee well.
Unfortunately Billee's seizures still hadn't
stopped in the time frame that her neurologist had given us when we
got the results of her EEG.
Therefor on Friday (13th) we saw him
and he suggested that we start Billee on a course of steroids
called Prednisolone.
Prednisolone is only a short term drug but it
attacks the hypsarrhythmia.
We
saw her paediatrician today and it looks like we will be increasing
the dose on Saturday and then we can start to wean her off the
following week.
At
the same time we are increasing the Lamictal each week. If this
doesn't work we have other drugs to introduce.
As
you can imagine we are praying the Prednisolone works as we really
don't want Billee on too many drugs again.
Hypsarrhythmia is basically a pattern shown on
an EEG of constant abnormal brain activity. It indicates that
Billee's brain is in a constant state of chaos, kind of mis
firing.
It
is usually associated with infantile spasms (wests syndrome) which
is a very serious seizure disorder that affects infants.
Billee has been experiencing firstly absent
seizures and then tonic seizures. Tonic is when she clenches her
fists, toes and teeth and looks very intense.
If
the hyps went untreated Billee's brain would never be able to focus
on anything long enough to develop any further.
The
prednisolone worked last time so we pray it does the same this
time.
Hypsarrhythmia only affects babies until
approximately 2 years of age at which point it can manifester into
other seizure disorders. Even if we do manage to clear it this time
Billee is still at risk of it returning again.
Due
to the constant seizure activity Billee is having some trouble
focusing and following objects. Her vision aid assures me that this
will improve once the seizures are under control.
So
our beautiful baby girl is sleeping quite a bit at the moment
firstly from the seizures and also from the medication.
Please every one keep her in your
prays........
On a
more positive note we start ABR training next week which we are
very excited about.
With
your help we have managed to raise over $6000 which has not only
covered the cost of the first clinic but will also pay for the
first 4 months hire of the machine.
We
will be manually ABRing 3 hours a day with Billee but we can put
the machine on her overnight for an extra 12 hours
therapy.
So a
massive THANK YOU to all of you that have helped.
This
month I want to especially mention the following people:
-
*
Billee's Uncle Gary and Auntie Katy who raised money by selling
unwanted clothes on a market stall.
-
*
Katy, Margaret and Vickie for holding Emma Page jewellery parties
and once again Louise Blake for donating all of the profits from
those parties to Billee.
-
*
All the lovely ladies who bought jewellery or donated money at the
parties.
-
*
Every body who donated money through the website.
-
*
Renee and Tracy for raising money by selling their old
furniture.
Glenn and I are so lucky to have the constant
love and support of both our families who help us all the time in
so many ways.
Whether it be financially, looking after the
children or cooking us dinner we are extremely greatful to you
all.
Now
that Christmas is over we really need the help of a few good people
who can organise some major fundraisers.
If
you work for a large company, are part of a sports team (or your
child is), belong to a church or just have access to a number of
people we NEED your help.
I'm
finding it very hard in between all of our appointments,
commitments and research to find any spare time to organise
fundraising.
There just doesn't seem to be enough hours in my
day!
It
is really starting to worry me because we have just spent all the
money we had raised on ABR and I know that unless I get some help
Billee won't have the opportunity to keep having the therapy she
needs.
So
if you want to help and take charge of either a chocolate drive or
organise a charity dinner or lunch etc.. please please e mail
me.
Thank you......
I
have added a link below to the Napa center. It is in Los Angeles
and does some incredible things with brain injured children. I
received an e mail from them saying that they feel their intense
therapy programmes and neuro suit therapy could help Billee and
would work along side ABR and AIAHP programmes.
As
they are in the USA we would have to travel there for 3 – 4 weeks
of therapy which we(Glenn and I ) could then continue with when we
return home.
I
will be looking into this closer in the next couple of weeks and
will keep you all posted.
As
I've mentioned before things can change so quickly with
lissencephaly and this month has been a very harsh reminder of
that.
One
day Billee is doing great and acting very responsive and alert and
we feel like we are taking huge steps forward.
The
next day we feel like we have had a massive shove
backwards.
Life
really is precious and you really do have to just take one day at a
time, enjoy the moment and as hard as it may be try not to worry
about what will happen around the next corner.
There are lots of children with brain injuries
doing things that doctors said they couldn't and wouldn't do and
proving to every one that miracles can happen.
We
believe in Billee and she inspires us to believe in ourselves and
our ability to do the very best we can for her.
She
is our little miracle happening......
www.napacenter.org

Billee
with one of her lovely Nan's
February 10th
This is just a quick update to
say that unfortunatly in the last few days Billee has started to
have absent seizures again.
She had an EEG today and it
showed that the hypsarrhythmia has returned. Her neurologist has
increased the Epilim and Lamictal and now we wait for a few days ,
hold our breath, keep everything crossed and pray that she
improves.

If not Billee will have to start
another course of steroids called Prednisone. This was effective
last time in clearing the hyps but it (along with a combination of
other drugs) caused her to become very drowsy and as a result she
lost most of her awareness and vision.
So here we go - the
lissencephaly roller coaster ride has begun again. Please pray it
isn't as rough and bumpy as our last ride.
(I will update again on the 19th
like normal)
January 19th
I am pleased
to report that Billee has had a pretty good
month.
She met her
Auntie Carole, Uncle Lee and big cousin Charlie for the first time
as they came to visit from England and Auntie Carole gave Billee
her first hair cut.
Santa was
very good to Billee and brought her lots of goodies which her 2 big
sisters kindly opened for her!
Billee has
remained very alert throughout this time and also very
healthy.

Santa brought Billee Elmo!
Chillin' at the
beach!
In the last
few days we have started to give Billee slightly lumpier food than
the pureed that she usually has. I was a bit nervous about this
(and still am) because of the choking risk. She seems to be
managing quite well but it is still very early days. She is also
drinking fruit juice (thickened) to increase her fluid
intake.
Her hands
seem to be 'feeling' a little more and she is putting her fists
into her mouth which is great because it means she has finally
found them. Hopefully she will continue to do this and find her
fingers too.
Sometimes
you can see her looking at something and it really looks like she
is wanting to touch it. I just pray for her to be able to one day
purposefully touch things.
Even though
I've accepted the fact that this is her now and believe me she is a
joy to have. I will fight her whole life for her to sit up, walk,
use her hands and communicate with us but if she never does any
these things we will still love her
unconditionally.
We are
really hoping that with all the intense therapy we are doing and
the positive results that we are seeing so far that one day all
this will be possible.
While she is
good we are enjoying every minute of it and savouring every
second.
She is
definatly a gift that has made our family
complete.
Last week we
received the results of our genetic blood test which showed that
neither Glenn or I have the chromosone deletion like Billee. This
was the result we expected and even though it came as no surprise
we were very relieved.
This means
that Billee having lissencephaly is purely an act of
God.
We have
booked for the ABR clinic which starts on February 27th.
Billee is being assessed by the inventor of the therapy who is
coming to Australia for the first time, which we are really excited
about. Billee is also continuing her programme with AIAHP (who will
be re assessing her very soon) and the cranial sacral therapy which
she goes to the Chiropractor for.
We would
like to thank all of you that have helped us to raise the money for
this and let you know that we are not too far away from reaching
our first target. So far we have raised approx $5900. Unfortunatly
there are another 2 ABR clinics to pay for this year as well as
further AIAHP assessments and other therapies.
So please please keep up your fantastic efforts in
2009.
We would
especially like to thank the following people:
-
- Every one
that donated through the website (there have been a couple of very
generous donations this month).
-
- Mick
Bedford for selling some items on ebay before the website was set
up.
-
- Tash
Whitehead and the parents at St Anthonys Catholic School for their
collection.
-
- Dom Dafur
and his friends for organising a collection whilst celebrating the
birth of his new baby.
- - Renee Yourell for holding an Emma Page
jewellery party and Louise for donating all the profits on the
night.
I feel very touched by peoples
generosity and their understanding and enthusiasm to help
Billee.
Thank you
all.........
December
19th
Billee has so far this month
managed to stay out of hospital which we are obviously very happy
about. We are keeping our fingers firmly crossed that it stays this
way over Christmas.
She is definately more alert
and still improving.
She has even managed to roll
from her back to her tummy a couple of times which is a new
thing.
Since Billee has been
improving it has given us time to realise just how worrying all the
other little things that come with lissencephaly are and to reflect
on the awful couple of months we had when she was in
hospital.
We constantly worry that she
will asperate her milk or food and catch pneunomia as this is very
common with lissencephaly children and can be a cause of
death.
We always insisted whilst
she was in hospital that she continued to be orally fed and not
tube fed and thankfully we have managed to avoid the tube on every
occasion so far.
Her fluid intake can be a
cause for concern so we are always monitoring this. Since her last
visit to hospital Billee has been unable to drink from a bottle so
we now feed her milk in a special cup.
Giving Billee her medication
and vitamins is often hard as she is unable to swallow liquid that
isn't thickened so we try and add it to her food. Therefore keeping
on top of her food and fluid intake takes a lot of effort and is
very time consuming.
Luckily we seem to have
found the correct combination of medication to control her
seizures. I am pleased to say that we have only seen one or 2 eye
flickers in the last month which is fantastic.
It seems children with
lissencephaly have major problems with seizures around 6 to 12
months and then again at around 3 when the mediction needs to be
reassesed.
As you can imagine we hope
we can keep Billee's seizures at bay until she is 3 at least. But
again it is another constant fear in the back of our minds and
every slight stare sends our hearts racing.
Lots of you have made a huge
effort fundraising this month and we would like to say a big thank
you to the following people for their fantastic
contributions.
- Taren Point Public school
who let us have a stall at their Spring Fair where we sold
Christmas cards and raised $220.
- Kankinya Pre school who
held a raffle and raised $225.
- Bobbi proved just how easy
it is to make a huge ammount without too much effort by holding a
garage sale at her house.
With her friends donating
some amazing gear and with the help of Shara on the day they raised
close to a massive $750! - well done girls!
- George ( my 8 year old
nephew ) got people to sponsor him for every goal he scored at
football and raised $230 – we are very proud of you
Georgie!
- Curves Gym at Maroubra for
donating a discounted membership.
- The Sydney Roosters Footy
team for donating a signed ball by all the team and to Tash for
organising both of these great things.
- Louise Blake for holding
an Emma Page jewellery party and donating all the profits to
Billee.
- Arsenal Football Club for
their donation of £250 and to Pat Conway for organising
it.
- Larissa for all her
fundraising advice.
- All of you that have made
donations through the website and sent cheques for
Billee.
- Every body who bought
Christmas cards and sold them to work colleagues and family
etc...
We are extremely greatful to
you all but as you probably realise this is only the
beginning.
For Billee to be able to
continue her programme with AIAHP and start with the ABR therapy we
need to raise lots more money so please please please keep it going
in 2009!
We wish you all a very
Merrry Christmas and a fantastic new year!
19th November
2008
Billee came home from hospital at
the beginning of October at which time we began to change her
seizure medication. We managed to wean her off Topomax which I felt
was the drug that made her very drowsy and robbed her of all her
alertness and vision. We have also started to replace Vigabatrin
with Lamictal. Her neurologist feels that one drug alone probably
wouldn’t control her seizures so she has remained on Epilim as
well.
October 19th was
Billee’s 1st birthday.
As I’m sure I am going to be with
every birthday, Christmas, holidays etc… I was very worried Billee
would be sick for her big day and we would spend it at the
hospital.
As it happened she saved it for
the following day when she came down with bronchilitis!
Her birthday was a lovely hot day
and every one had a great time. Billee was still not back to her
old self (pre seizures) but was definitely on her way.
2 weeks later was Billee’s
christening (yes I was worried again!). Thankfully she was on great
form and looked beautiful in the same christening dress her 2 big
sisters wore before her.
Tony and Bobbi (Billee’s
godparents) gave us the most amazing present. Not only did they set
up this fantastic website but they also organised over 1000
Christmas cards to sell with every last cent going towards www.beautifulbillee.com.au
We will never be able to thank
them enough for this awesome gift.
Thank you to all of you that
bought the Christmas cards and also to those of you that sold lots
more to your family and friends.
I realise some of you had
probably already bought your Christmas cards but don’t forget there
are still lots of other ways which you can help just register on
the website and check them out!!
My nephew George has already
started by getting people to sponsor him for every goal he scores
at football until the end of the season. Well done Georgie -
he scored 3 tonight!!
I am now very happy to report
that (apart from tonsillitis last week and a constant cough that
they now think may be asthma) Billee is going great.
Since the med change she has
become 1000% more alert and aware. She is crying and babbling again
(she was silent for about 2 months). She is moving and rolling from
her tummy to her back again. She is even smiling and for the first
time last night she laughed! Her vision has also improved and she
is fixing and following again.
So far she has remained seizure
free and she is doing very well with the therapy programme she is
on.
Billee’s programme is tailored
especially for her by the Australian Institute for the Achievement
of human potential. A separate section explaining this and the
other therapies she does will be added very soon. Basically it
covers every thing including vision, tactile, balance, physical and
nutrition and is very hard work.
It is because of this and other
future therapies that are also very costly that Tony and Bobbi have
set this site up. We need all of you to get behind us and help
fundraise. We NEED your help to help our precious little
girl.
As with any child with
lissencephaly things can change very quickly. Because of this we
are learning the true meaning of taking life a day at a time. Every
moment is being cherished and even the slightest smile or giggle is
precious. Who knows what will come next, this is a whole new world
that even in our worst nightmare did we ever dream we would have to
visit…….
But just to have our beautiful
Billee is a blessing that we will be forever greatful
for.
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