Monthly Updates

19^thJanuary 2012

HAPPY NEW YEAR EVERYONE!

Unfortunately 2012 hasn’t started on a very good note for Billee.

On New Year’s Eve Billee woke up looking very sick with a sore throat, a bad cough and clearly in pain so we took her off to the doctor’s.

Initially they thought she had tonsillitis and hand, foot & mouth disease as spots began to appear around her mouth.

I also had the same symptoms and the inside of my mouth exploded with blisters and ulcers (VERY painful!).

I was tested for herpes, the cold sore virus and the results came back positive!

Billee was then tested and her results were also positive.

Apparently someone who carries this virus must have kissed Billee on the lips over the Christmas period and passed it onto her.

I then caught it from Billee because I spend half my life kissing her!!

The worrying thing is that the person who passed it on didn’t even need to have had a visible cold sore to do so.

They obviously didn’t realise this and didn’t do it on purpose but now as well as all of poor Billee’s other issues she is now apparently prone to getting cold sores as well L

I am busy at the moment organising the children for the new school year about to begin in 2 weeks time.

Billee’s 2 big sisters are both starting new schools and Billee will be going to preschool 2 days per week.

We are hoping to move into a house closer to the school so fingers crossed it all works out for us!

I have also lined up appointments with The Cerebral Palsy Alliance and The Cerebral Palsy centre at the hospital where we will be getting therapy services from.

We are hoping that we are able to get some funding for some new equipment for Billee in the next few months.

We will be looking at a wheel chair, a standing frame and a new seating system for our home.

We will also have to get our car modified with a ramp so that the wheelchair can be transported.

Most importantly Billee will be starting a new MAPS (multi sensory therapy) programme very soon.

Due to her being so sick and the added stress of school holidays she has been having a little break from all therapies for the past few weeks.

On a positive note Billee is in the process of being weaned off of the ketogenic diet and we haven’t seen too many more seizures!

This is fantastic news!

She is in the second last stage of the weaning process so we are praying that this continues to go well and soon she will be completely off the diet.

We will then start the process of giving her tastes in her mouth and trying to feed her orally as well as still taking the majority of her feeds through her feeding tube directly into her stomach.

The next few months will prove to be very busy and hopefully successful in all areas.

Thank you to those of you who donated online or sent a cheque over Christmas.

Also a special thank you to Kate Wilson from ‘Langshaw Dancity’ dance school and her pupils who instead of buying Kate a Christmas present this year donated the money to Billee.

Thank you to Uncle Pete’s Toys at Castle Hill and Wollongong for your continued support and Uncle Pete’s Toys at Brookvale and Manly Vale for the Christmas raffle they held and to all their customers.

So begins another year that we are blessed to have our precious little Billee.

Let’s hope this year Billee makes some positive improvements with her development but most of all let’s hope that she is happier and more comfortable than last year and that she stays healthy.

Thanks for following Bille’s journey and for your continued support with our fundraisers. We will be organising a movie night in the first half of the year so I will keep you all posted!

21^stNovember

Not too much has happened over the past month.

Billee has been taking clonazopam to help settle her of a night and decrease the chance of her waking and having a seizure.

This has helped somewhat but she continues to be unhappy at other times during the day.

We seem to have exhausted every medical avenue apart from the ketogenic diet that she is on for seizure control.

We are thinking that it may be time to begin weaning her off soon.

I am a little reluctant to rock the boat before Christmas as her seizures could worsen and I really don’t want her in hospital and our family apart.

She saw her Ophthalmologist last week who felt her vision had definitely improved!

Obviously we are very pleased with his observation.

Thank you if you made a donation in the last month.

Also thank you to everyone who has donated money throughout the year and made it possible for Billee to continue with her MAPS therapy.

We recently met with the Cerebral Palsy Alliance who will be providing Billee with physio, OT and speech therapy services next year.

Up until now I felt that standard therapy didn’t give much hope for Billee with the severity of her condition but recently I feel that she has become frustrated and maybe even a little bored?

Due to this we have decided that as well as MAPS we will also give standard therapies a go and see if they can help her now she is older.

Billee continues to enjoy preschool and because of this she will be going 2 days per week next year.

Whilst at preschool she has hydrotherapy, exercise therapy and the OT and speech therapists will also be working on helping her to use her hands purposefully and finding a way for her to communicate with us.

Initially they will be working on teaching her what ‘yes’ and ‘no’ mean and then hopefully teaching her how to ‘say’ it.

By the word ‘say’ I don’t mean speech which of course would be amazing but instead maybe a look or even simply an eye gaze one way or the other.

Any of this would be fantastic as it would open up the whole world for Billee.

Imagine if we could ask her things and she was able to answer yes or no!!

As Christmas approaches please spare a thought and a prayer for all the families spending it in the hospital this year and hold your healthy children close and be thankful.

I am thankful for everyday we have with Billee and our other 3 children.

I am looking forward to Jaida’s first Christmas and hopefully a nice, relaxing, hot summer! (Not too hot for Billee though).

Thank you all for your ongoing support, compassion and generosity.

Merry Christmas & Happy New Year!

Billee loves her grandad & he adores her!

Hydrotherapy at preschool

20^th October

Yesterday Billee turned 4!!

Happy Birthday beautiful girl!!

On Tuesday we saw Billee’s neurologist hoping to get some answers to her ongoing crying!

The past couple of months she has been waking in the night and screaming for hours and no one seems to be able to work out why.

She then ends up having more seizures as she is tired!

We have exhausted the gastroenterologist side of things and yesterday she had a renal ultrasound and hip x ray.

Both came back normal.

She has been prescribed a drug called clonazapan to help her sleep so we are in the process of trialling this at the moment.

We also have a back up drug to try but if this fails we will then be trying to wean her off the ketogenic diet.

This process alone could send her seizures spiralling out of control so we are praying for a solution before we get to this!

I would like to say a huge thank you to Arsenal football club in England. They donated another £500 last week.

I have said it before but as my family are lifelong Arsenal supporters I feel very honoured that they constantly support Billee even though we live in Australia now.

Thank you to Alan and Berni and to my Auntie and Uncle, Pat and Terry Conway for organising it!

Also thank you to our other ongoing supporters, Uncle Pete’s Toys & How Bizar Hair Salon.

Thank you if you donated this month and thank you to those of you that sent Billee a little something for her birthday!

Beautifulbillee.com.au has been up and running now for 3 years!

Billee’s godparents, Bobbi & Tony Conway launched it at her christening and have supported it ever since.

In this time not only has it be a fantastic platform to help me to fundraise but more importantly it has helped many families whose child had recently been diagnosed with Lissencephaly.

So many Mum’s or Dad’s have said to me that after receiving the diagnosis they read the prognosis for their child and their world fell apart.

Finding Billee’s website gave them hope again through their despair and I have been able to offer support and most importantly knowledge.

For that I will be forever grateful to Bobbi & Tony. You have not only helped me come to terms with Billee’s illness but you have also helped so many other parents, grandparents etc...

We love you guys so much!!

So 4 years down the track and how do I feel about my perfect little baby girl having Lissencephaly?

Some days I still feel like someone is sitting on my chest and I can’t breathe, I am still devastated and crushed and I still want to shout that it’s just not fair!

When I see my little girl unable to talk, eat like one of us, walk or have a seizure I want to scream!

When she has to be admitted to hospital and go through so much discomfort and pain or when she cries during therapy it breaks my heart.

In the past 4 years I have felt true heartache and pain.

BUT

Take a look at what and who Billee has become!

Every time my heart breaks I just look at her and it melts.

She is the most precious, bravest, amazing little girl in the world and even though some days are a battle she constantly fights on like a true hero.

She may not be able to do all the ‘normal’ things that we take so much for granted but she smiles and laughs. She is surrounded by the love of us, her sisters, grandparents, cousins and friends.

She has an amazing team of doctors, therapists and teachers.

She has a beautiful ‘bestie’ called Brodie who adores her and even though he is a typical 4 year old he really seems to ‘get’ her and loves her for who she is.

She has taught us to appreciate every tiny miniscule milestone that she reaches. Having her makes us realise what is really important in life and not to ever take anything or anyone for granted.

She is the light of our lives!

Just watching our other children with her is beautiful.

She is an inspiration to us all and I advise you all to learn from her.

Please pray that she is healthy and happy for many more years to come!

19^thSeptember

Over the past 4 weeks we have been treating Billee for a toxin called clostridium difficile which has been present in her stomach and causing her severe pain and discomfort.

Initially her screaming and pain seemed to decrease but then after the first 10 day course of the medication finished she seemed to go back to how she had been before.

A further 10 day course was then administered which she finished yesterday.

(Unfortunately her baby sister also managed to catch this awful toxin!)

Last week Billee saw her gastroenterologist to see what her opinion was.

She suggested we give her a pro biotic and another medication called motilium which aids in emptying the stomach.

As Billee’s diet is so high in saturated fat she explained that sometimes the stomach can have problems emptying and thus causing pain.

Unfortunately if this drug doesn’t help she then felt we had exhausted the gastro side of things and we would then be looking at something neurological causing the trouble.

Most recently Billee has started waking up in the night, having a seizure and then screaming for hours.

She may need to have telemetry which is basically a 24 hour EEG and video monitoring.

For this she will need admitting to the children’s hospital.

We have an appointment with her neurologist in October so we will give the motilium drug until then and if there is no improvement then this may be the next route of investigation.

With every new challenge that presents itself to Billee our hopes and expectations for her shift.

Initially we were so focused on ‘fixing’ her and wanting her to walk and talk etc....

When she started having seizures our only hope was to have them controlled but since she has been so unhappy and in pain our newest goal is to simply see her happy and content.

She needs to be able to enjoy her life.

The movie night was a success and we raised $3390!

Thank you everyone that contributed to that.

As usual the lead up to it was very stressful with tickets sales increasing and decreasing by the hour!

But in the end most tickets were sold and we had a packed out cinema.

Thank you to everyone who helped on the night and also donated prizes.

The next couple of months will be busy with Billee’s 4^thbirthday on October 19^thand more specialist appointments booked in.

Before Christmas she will see her neurologist, paediatrician, ophthalmologist and gastroenterologist and could potentially have a hospital admission as well.

We will also be seeing her dietician and speech therapist and attending the feeding clinic in the hope that her oral feeding increases.

Billee’s weight has increased and she has gained the 2 kilo goal that her dietician had set for her!

Coincidently this time of year usually sees us at the children’s hospital.

Just before her 1^st birthday Billee was admitted for seizures, low heart rate, hyperthermia and pneumonia.

Just before her second birthday she had her surgery to put her feeding button in her stomach and she then started the ketogenic diet.

Then last year right before her 3^rd birthday she was admitted for reflux investigations and dental work.

Every year we wonder will she be healthy and at home for her special day!

Please say a special prayer and keep everything crossed that she is this year for her 4^th birthday.

As every birthday reached for Billee is a massive achievement and a big celebration as children with Lissencephaly have a much shortened life expectancy.

19^thAugust

We have had a lot on this month with various appointments trying to get to the bottom of Billee’s pain which is making her very upset.

She had a barium study on Wednesday where special liquid was put in her button and then X ray pictures taken intermittently to follow the liquid through her stomach and then on to her bowel. This showed no blockages or twists in her bowel which is obviously good news.

She also had stool samples taken which I just got the results of today.

They showed bacteria called Closteridium Difficile which could well be the reason for the pain. This is treatable and hopefully will put an end to the constant screaming which has been going on for months now!

She will start the treatment on Monday as the chemist had to order the medication in so fingers crossed!

Also this month we saw Billee’s ketogenic dietician and had to make some changes to her diet. It seemed she had lost weight so her calorie intake has been increased with the hope that she will gradually gain around 2 kilos.

They were concerned that her body hadn’t been absorbing the ketocal formula or medication as she has had a few tonic spasm seizures.

With the alteration we pray that the seizures are now kept at bay.

As well as crying from pain Billee has been very frustrated in herself for a while now. We have come to the conclusion that one of the reasons may be that she is craving taste and food. As she is on a special diet to help control her seizures we are very limited to what food she is allowed to have but we started giving her a recipe given to us by her dietician of strawberry yoghurt. She seems to enjoy the taste and her swallow seems to be ok but we are taking it very slow as she is at risk of aspiration which can then cause pneumonia.

We have had quite a bit of winter sunshine lately so have been able to get Billee out and about a little more which she loves.

Her visual therapist suggested we get her a special needs swing for the garden which she is going to apply for funding for so hopefully this will come for summer.

Billee’s MAPS therapy programme is going very well and our local newspaper wrote a story about her being the only child in the world with Lissencephaly currently doing MAPS!

This is the link to the story http://www.theleader.com.au/news/local/news/health/therapy-improves-toddlers-life/2253124.aspx

We are hoping to generate some interest from other families with children with neurological disorders in the hope that MAPS may also help them.

As previously mentioned we are having a fundraiser movie night on Thursday 1^st September at Cronulla Cinemas.

The movie screening is ‘Horrible Bosses’.

If you are local and can grab a group of friends and join us please do so as we still have tickets left.

They cost $20 and you can e mail me to purchase them at info@beautifulbillee.com.au

I would like to say a big thank you to Boxing Middleweight World Champion Daniel Geale for very kindly donating and signing one of his boxing gloves. If anyone would like to purchase the glove it is currently up for auction on e bay.

Also thank you to his trainer Graham Shaw and his wife Chris for organising this for Billee.

Thank you also to Uncle Pete’s Toys in Castle Hill, Brookvale, Wollongong & Manly Vale and their customers.

I am going to leave you with this beautiful moment I captured last week of Billee and her ‘bestie’ watching Dora together!

19th July

Billee has been healthy and well this month!

We decided that as the weather has been rather cold lately (for Australia) we wouldn’t take her out and about.

As a result she has been in her warm, secure environment for the past 4 weeks and hasn’t got sick once!

She has been playing with her big sisters, getting to know her baby sister and doing lots of M.A.P.S!

She will be back at preschool this week so let’s hope she doesn’t catch anything there.

I am feeling 1000 times better lately, organised and back in control!

I’m organising a fundraiser movie night as we are desperate to raise some money to pay for Billee’s therapy.

As I’ve mentioned before her main therapy is called M.A.P.S (multi sensory) and is run by a place called ‘The Gordon Pomares Centre’ in Canada.

M.A.P.S costs us $2000 every 3 months ($8000 per year).

Glenn and I do the programme with Billee twice every day. It consists of various exercises using smell, touch, sound, taste and vision.

It is based on brain plasticity and the belief that the brain (given the correct input) is able to repair itself.

By performing the various exercises and increasing the serotonin and dopamine in Billee’s brain we hope that it helps it to grow new neuron pathways and create new connections.

Billee has been doing M.A.P.S for over 12 months and I can confidently say that it has helped her far more than any other programme we have tried.

Her improvements have been very slow but at least we can see some positive improvements from it.

It is therefore vital for her to continue with it for the foreseeable future.

If anyone knows of a business or individual that would be willing to pay for MAPS for Billee they can contact The Gordon Pomares centre directly and make a payment.

The e mail is kent@unlimitedbrain.com or the phone number is +1 949 529-5117.

(Remember they are in Canada!)

The other therapy we do with Billee is ABR (advanced bio mechanical rehabilitation).

ABR is a physical programme which works on repairing the myofascia (the sack inside the body which contains the organs).

By strengthening the myofascia, Billee’s tone will hopefully improve and her body will be able to function more effectively.

It also helps to minimise the spasticity to Billee’s tone which is likely to get worse as she gets older making her very uncomfortable and in a lot of pain.

ABR is performed in 2 ways. Firstly there is a machine which is fitted to the body that Billee currently wears over night.

The machine hire costs us $4000 per year.

The other way is manually and this is taught by the ABR trainers from Singapore. They travel to Australia 3 times per year and hold clinics for parents to learn the technique.

We attended 2 clinics when Billee was a baby but unfortunately haven’t been able to afford to attend another one since.

Each clinic costs $2500.

Even though the machine is great nothing takes the place of manual hours and as ABR is still evolving it is important to attend clinics as often as possible.

The reason I am explaining all of this is because I know some of you have donated money to help Billee in the past and I think it’s important for you to see where your money goes.

As well as Billee’s therapy costs we also have continuous medical costs such as medication, syringes, ketocal (Billee’s food), sensor probes for her pulse oximeter etc....etc.....

We are now lucky enough to get 80% of Billee’s special needs nappies funded.

Equipment is also ridiculously expensive!

Thankfully Billee’s bed and pram were funded and we have more recently had a bath seat and also a special needs car seat paid for as well.

In the past we have been able to purchase a seat and some special needs toys. Usually I search the internet and end up buying such items in the USA as Australian prices are far too high!

So the movie night will hopefully generate some funds but we will still need lots more.

The movie is ‘Horrible Bosses’ and will be screened at Cronulla Cinemas on Thursday 1^st September at 6.30pm.

Tickets are $20 and can be purchased by e mailing me at info@beautifulbillee.com.au

There will be lucky door prizes and some great raffle prizes so grab a group of friends and see you there!

We are having a stall at ‘Taren Point public school’ spring fair on September 17^th.

On the stall we will be selling boxes of greeting and Christmas cards along with chocolates and a couple other small items.

So if you are local please pop down and show your support for Taren Point Public school as well as Billee.

Thank you.......

Also thank you to the following businesses for continuing to sell boxes of greeting cards:

• * Uncle Pete’s Toys at Castle Hill, Brookvale, Manly Vale & Wollongong.
• * How Bizar Hair Salon in Sans Souci

Billee has an Ophthalmology appointment next week and appointments with her paediatrician and neurologist in the near future so I will keep you all posted.

Unfortunately recently we found out that a 5 month old little boy in our area (actually a friend of a friend) was also diagnosed with Lissencephaly .

Please keep his family in your prayers as we know just how devastated they will be feeling at the moment.

It will be a long time before they get to the point where we are now........

24^thJune

Billee had her first winter hospital admission 2 weeks ago!

She had a chest infection and low saturated oxygen levels. It seems the infection provoked her asthma so she is back on the inhalers for winter.

Unfortunately Billee isn’t the only one who has been sick as the whole family had a stomach bug (except me!) and baby Jaida had bronchiolitis

Billee seems to be picking up now and we are praying that she continues to improve.

We are back on track with MAPS again and are very thankful that The Gordon – Pomares Centre charged us only a fraction of the costs for the next 3 months.

Due to me being pregnant we hadn’t been able to organise any major fundraisers and unfortunately we ran out of money!

I’m happy to say that we are in the process of organising a movie night for  Thursday 1^st September  and are back on track to start raising some much needed  funds to continue to pay for Billee’s therapy and medical expenses.

Any donations would be greatly appreciated........

Life with the new baby is starting to settle down and I am beginning to fall into a routine. I’m not sure what Billee thinks of Jaida yet. She doesn’t seem to mind her and she looks at her a lot but it’s hard to know what she is thinking or what she understands. Hopefully as time goes on and Jaida becomes more aware of Billee they will interact more.

Not too much else has been happening this month. Billee had 3 weeks off preschool whilst she was sick but has returned today.

As I mentioned above we are having a movie night on Thursday 1^stSeptember at Cronulla Cinemas. The movie is ‘Horrible Bosses’ starring Jennifer Anniston and Jason Bateman.

Tickets are $20 and will be on sale from next week.

If you would like to purchase some please e mail asap as they usually sell quite quickly once we advertise in our local newspaper, which I will be doing the following week.

Thank you for everyone who continues to support Billee and her fight with Lissencephaly.

It’s hard to believe that it has been over 3 years since we got her diagnosis and how far we have all come since then.

Please keep our little girl in your prayers....................

19th May

As you already know Billee's baby sister Jaida arrived on Monday 9th May and since then our house has been a little bit crazy!!

Billee is good and I will fill you all in next time with what we have planned but for now I wanted to share these precious moments with you as Billee gets to know Jaida!

Thank you every body for your continued love and support........

19^thApril

I have carpel tunnel especially in my right wrist which makes my fingers numb. I had a steroid injection a few weeks ago which has helped with the pain but the numbness makes it hard to type.

Therefore the following update was written by Billee’s eldest sister who is 11 and is always a fantastic help to me!

Last week it was Billee’s fourth week at preschool. She had a great time and then at the end of the day she was excited to come home and see me (haha). But of course I had to see if the preschool was ok for her to go to. (LOL)

We are on Easter holidays at the moment so I have already spent a week with Miss Billee as our other sister has been at a school dance camp. I wake up every morning, go into her room and say hi! I always get a wave, a smile or just a go away Jay look!

Billee saw her Paediatrician this month and apart from the few seizures she has had, she looks good. She has gotten taller and lost a little bit of weight but nothing to worry about. Also he commented on how good her muscle tone felt.

As for the seizures, she has had a few more so we have upped her medicine in the hope this will control them.

At the moment she is sitting in her chair watching her favourite show Dora the Explorer. So of course I know every song and episode there is!

A couple of weeks ago we went to the Sydney Aquarium and met a family that has a son who has the same condition as Billee. His name is Dekkard and he is a little younger than Billee. We were there all day and had a great time. Billee and her friend had a great day seeing all the fishes, sharks and other animals there.

 We are all getting very excited about the arrival of our new baby sister coming soon (especially Billee and Brooke because it’s a girl and I wanted a boy !! L lol).

We just got our last delivery of chocolates.

Thank you to everybody who ordered them.

Thank you also to:

• * Uncle Pete’s Toys at Brooke Vale, Castle Hill, Manly Vale and Wollongong.
• * How Bizarre Hair Salon at Sans Souci and their clients.

Billee had an EEG today as she has had more seizures over the last week.

Strangely they are always at the same time between 6.30 and 7pm when she is waking from an hour nap before her last feed.

We are waiting to hear from her neurologist for the results.

Please pray it’s not too bad news.............

20^thMarch

I wrote this update a couple of days ago and was planning on posting it yesterday but things have been getting very stressful lately with my pregnancy.

I have been very uncomfortable (due to my size) and in lots of pain lately (due to having severe carpel tunnel in my wrists as well as every other complaint that goes with having your 4^thbaby at age 37 I guess!) and I have had a lot of other stressful and emotional things going on from other sources.

Basically I have been very difficult to live with and I apologise to all my family for this!

What happened last night gave me a harsh reality check – Billee had her first seizure since July 2009.

I am devastated, disappointed, sad and very scared of what might lay ahead.

I am so embarrassed by my selfish behaviour lately. I had been floating along in a false sense of security with regards to Billee’s condition. I had been stressing at Glenn about what he had and hadn’t been doing correctly with her therapy programme (as I am restricted as to what I can do) and I had been extremely short tempered and intolerant to Jaymi and Brooke.

All of a sudden in those 10 minutes last night it all came crashing down on me when I realised how lucky we have been.

Almost all of the other families I know with children with lissencephaly (there are about 200 of them worldwide who are a huge support network to me) have to cope with seizures every day.

My heart goes out to you all as I pray that last night was just a one off for Billee as we are so close to having her medication free for the first time in almost 3 years.

Today Billee seems her ‘normal’ self but from now on I won’t be stressing over such insignificant things and making everyone else’s life such a misery!

So onto to update I had previously written:

This month saw Billee start preschool!!

After vowing that Billee would never leave our side let alone go to school, Glenn and I did a total turn around last week and enrolled her at preschool!

The school is for children with special needs and Billee’s teacher is lovely. She is in a class of 4 children and has a teacher’s helper too.

She is only going for 1 day per week at the moment which I feel is enough (for me anyway!). The day starts with hydrotherapy which Glenn stays with her for. She also has speech therapy where they will be focusing on communication and also singing and outside play.

Her first day was pretty successful for Billee (I had to fight back tears for most of the day!! – pregnancy hormones?!!).

Her two big sisters picked her up at the end of the day which was nice as they were able to see (and give their opinion) on her classroom and teacher!

We think that it will help her socially and it gives her a little time away from us that hopefully she will enjoy also.

Billee continues with her M.A.P.S program and also kinesiology and osteopath and hopefully we will have the results of her stool tests next week.

Maybe we might finally get to the bottom of her gut issues then.

Also last week Billee had her first taste of food orally since having her feeding tube almost 17 months ago and she did wonderfully!

Although she doesn’t have a very strong swallow yet, she didn’t cough or gag and coped very well.

We will be giving her a very small amount of pureed food each day now just for pleasure as she is restricted to the food she can eat due to the ketogenic diet.

Billee has a visual therapist from the Royal society for the deaf and blind society called Ana.

Ana has been seeing her every fortnight since we got Billee’s diagnosis. We all love Ana, she is great with Billee and is a beautiful person and we value her help and input immensely.

The last time she was here one of my very close and very old friends was here with her two youngest boys.

Brodie is 3 and was born only 3 months before Billee. When we were pregnant Rene and I expected him and Billee to be the best of friends. We pictured them running around together, chatting and sharing toys and playtimes.

Well obviously things didn’t quite turn out as planned but that particular day during Billee’s therapy with Ana I witnessed something so beautiful and touching I have to share it with you all.

It seems Brodie didn’t ‘get the memo’ telling him that Billee can’t walk, communicate or play like a regular child!

He sat with her throughout her session talking to her, playing with her, pushing her in her swing and ‘loving’ her.

Ana commented that Billee had the best session in ages thanks to Brodie and when he left he said to Rene in the car “mummy I love Billee....”

Well done Brodie for seeing Billee for the beautiful little girl that she is and reminding everyone that Billee has many abilities not just disabilities and well done Rene and Ian for raising such a compassionate little boy.

It’s been quite an emotional few weeks for me as I get used to the idea of somebody else caring for Billee at preschool and I look forward to the birth of our newest little princess.

Deciding to have another baby after Billee wasn’t part of the plan initially. In fact when we were told that Billee had Lissencephaly I actually thought we would definitely not be having any more children.

I didn’t want to take one second of my time and attention away from Billee and her needs.

As she has gotten older and I have spoken to other families with children with Liss and similar syndromes we came to the conclusion that having another child would hopefully help Billee.

Our eldest 2 girls are amazing with Billee but they too have their own lives, school, friends, activities etc...

Our new little baby, even though I know she will obviously take some of my attention away from Billee I also think more importantly she will be like a partner for her. As they grow up together they will have each other as companions to play with and hopefully she will encourage Billee to develop as she imitates what her little sister does.

I know it sounds strange since she does have older sisters and Glenn and I but sometimes I worry that Billee may be lonely. Frustrated and trapped in a little body that is unable to do the things she maybe wants it to?

Therefore I see this new baby as a kind of gift to Billee. They will be like twins, always together.

The other reason we made the decision to have another baby was so that we are able to store her umbilical cord blood in the hope that sometime in years to come we may be able to use it in stem cell treatments for Billee.

Helping Billee in any way we can will always be our number 1 priority!

Thanks to the following people / places for their support this last month:

• - Uncle Pete’s Toys at Brookvale, Wollongong & Manly Vale.
• - How Bizarre Hair Salon in Sans Souci and their clients for their continued support selling cards and chocolates.
• - Kate & Craig at Riviera Dance studio.
• - Vicki Riley and all her friends in Engadine.
• - Bobbi & Tony Conway for their constant support.
• - Tricia Gauci and her family for selling boxes of chocolates.
• - Will Goodman for his kind donation. Visit www.goodwilldiving.com if you are planning a holiday in Indonesia and want to experience some of the best dives in the world.
• - Everyone else who are selling chocolates for Billee.
• - All of my ‘any cephaly’ family support group on facebook!
• - All of you who follow our journey month to month and read my updates and offer words of support.

I will be putting a final order in for chocolates in the next few days so there is still time to buy some!

Please e mail me as soon as possible and for those of you that are waiting thanks for your patience, I will have them very soon!

Billee and I on Channel 9's Weekend Today Show!

19^thFebruary

The big news this month is that Billee seems to have mastered the art of rolling over completely!

She has been building up to this for a few months but this week she rolled from her back to her tummy and then over again to her back!

I know this doesn’t sound like much but it is huge because it means that soon she hopefully will be able to use rolling as a way of getting from one side of the room to the other!

Miniscule baby steps I know but we love miniscule baby steps!!

We seem to have had another month full of appointments!

A few months ago I was advised to take Billee to see a Kinesiologist.

For those of you that don’t know Glenn and me, before we had Billee we were very western medicine orientated.

We were very apprehensive about ‘alternate’ medicine and therapies.

To be honest we had never had to look any further than our local GP as none of us had any major health concerns.

I came to realise pretty early on in BIllee’s life that with all of her issues and complications we may have to look a little further to find something that may help her.

Therapy wise we contacted The Australian Institute for the Achievement of Human Potential initially and Billee took part in a daily therapy programme advised by them.

After this we began ABR (Advanced Bio-Mechanical Rehabilitation) as Billee’s main physical programme.

As you are aware Billee now has a daily therapy programme made up by Claudie Gordon – Pomares and the M.A.P.S team which has so far been a huge benefit to Billee.

We have also tried cranial sacral therapy by a local Chiropractor.

Within the past year Billee has been experiencing what seems like uncomfortableness and pain in her stomach area.

She had investigations by her Gastroenterologist at the hospital to check for reflux etc... all of which came back pretty normal.

Still the pain seems to persist and some days she can cry and be very uncomfortable for hours at a time.

We then realised that maybe we needed to look outside of the box to something ‘alternate’.

After being advised by a couple of different sources to see a Kinesiologist I found a lady not too far from our house and she kindly donated some free visits for Billee.

The moment we arrived she immediately got the impression that Billee was in pain. She performed muscle tests on Billee and infant reflex tests and with the results she told us the following things:

• - Firstly none of Billee’s infant reflexes are integrated. She explained this by saying that babies are born with reflexes and by a certain age they should all be integrated.
• - Children like Billee that has syndromes etc... almost never have their reflexes integrated and this causes all kinds of problems to do with every aspect of the brain.
• - Apparently Billee’s were only 20% integrated and she will be working on them weekly to improve this.
• - She also said that by muscle testing she was able to tell that Billee has a gut issue and is in pain and very uncomfortable for much of her day and therefore  isn’t enjoying much of anything at the moment.
• - As far as the gut issue is concerned she suggested we do a hair analysis test for metals, a stool test for parasites and other bugs and a finger prick blood test for Candida.

We are now waiting for the test results.

Also this month Billee started a playgroup for children with special needs.

This is for 2 hours on a Wednesday and I of course stay with her. It is run by a local school for children with disabilities and so far it seems like it could be a good experience for Billee.

It gives her a chance to interact with other children, listen to a story, sing and play.

I will keep you posted on how she goes!

I purchased an amazing piece of equipment a few weeks ago from a place called ‘Waterwaybabies’

It is basically a pool and an inflatable ring that Billee wears around her neck. She floats around in the pool for 30 minutes every morning and she loves it!

Apart from enjoying it she has the opportunity to move her arms and legs freely by herself. We have been using this for only a couple of weeks and already she is improving and is able to move herself around.

I would advise anyone with a child that has issues similar to Billee’s to try it!

It was very cheap compared to most of the equipment we have had to buy (just over AUD$100) and like I said we love it.

The website is www.waterwaybabies.com

I will post pictures of Billee at the end of the update.

On the subject of equipment we currently have 2 applications submitted, one for a bath chair and the other for a special needs car seat.

We are praying that these get approved and soon!

For those of you that live in Australia Billee, Glenn and I will be making our TV debut next week!

We will be on ‘The Today Show’ on Sunday 27^thFebruary as part of a story about a charity called ‘The SMILE foundation’.

The SMILE foundation has supported Billee for the past 2 years by giving us $1000 per year towards the cost of therapy and equipment.

They are an Australian based charity set up to help children with rare diseases. As with Lissencephaly there is no one charity to help with each individual rare illness so charities like SMILE (and The Steve Waugh Foundation) is cherished by families like ours.

On 30^thJune  6 athletes will start their journey cycling around Australia in the hope of raising $1 million for SMILE and these men will be appearing on The Today Show to tell their story. The foundation required one of their families to be on the show as well and they asked us!

We are obviously very grateful for this opportunity to make more people aware of Lissencephaly and all rare disorders in the hope that more money will be raised to help families like ours and also to fund much needed medical research.

We have started our chocolate fundraiser!

If you would like to place an order details are on the home page of BIllee’s website.

http://www.beautifulbillee.com.au/

Thank you to everyone that has ordered so far!!

We are currently in the process of organising another movie night which looks like it will be in April.

I will give you all more details very soon and will e mail everyone who lives local once tickets go on sale.

Thank you once again to all of you for your support and please keep the fundraising and donations coming as we have a very expensive couple of months coming up with programme re assessments and six monthly payments required again.

19^thJanuary 2011

Happy New Year everyone!

I hope everyone had a lovely Christmas and that you are all having a great start to 2011.

Billee has been really well lately and we have had lots of appointments and things going on.

On Christmas Eve Billee’s bed arrived.

It is amazing! Billee loves it and it is proving to be very helpful in feeding her in the mornings when she is still half asleep as the back and feet are both electronically adjustable.

A huge thank you to The Steve Waugh Foundation for funding the bed and also to Dennis and Dennis Junior from The Bedroom shop in Sans Souci for doing a great job on the frame and for spending their Christmas Eve putting it together for us!

Billee has had Paediatrician, Ophthalmologist and Neurology appointments so far this month.

Her Paediatrician told us that her weight and height is spot on for her age and that she is looking very healthy at the moment.

We will however be seeing an ear, nose and throat specialist in a few months time to discuss Billee’s enlarged tonsils and constant tonsillitis through winter.

Her ophthalmologist commented on how good her eyes looked and how well her vision seems to be coming along.

We discussed glasses for Billee and we all agreed that it would be worth a try to see if they would make a difference to her vision as she is long sighted.

She got her glasses today and we haven’t decided whether they help or not just yet but she looks very cute!

Finally her neurologist was very happy with her progress on the ketogenic diet and the fact that she has managed to come off 2 of the 3 anti seizure drugs she was on.

We have now started to decrease lamictal which is the final drug and so far we are still seeing no seizure activity !

Fingers crossed in 10 weeks time she will be completely drug free.

We discussed the time frame that we would like her to be on the ketogenic diet for as the average time for a child to be on it is 2 years and Billee is coming up to 14 months.

We decided that we would re assess her situation in another 12 months and weigh up the health implications against being seizure free (if she still is).

I know for me being seizure free is probably more important than anything else as I am learning that our children can pass away from having seizures.

Just before Christmas a beautiful little girl called Caitlin who had Lissencephaly became an angel due to having a seizure and her heart stopping.

As when any child passes away this came as a huge shock to me and my heart bleeds for her Mum who I had spoken to many times about our girls.

Unfortunately this was a harsh reminder of how suddenly and easily Lissencephaly can rob us of our children.

As much as I would love to be able to sit back and not worry about raising money to pay for Billee’s therapies the truth is they are very expensive and we simply don’t have the money to pay for them.

Therefore we will be organising another movie night in the first half of the year and hopefully having a Christmas in July function as well.

I am also still selling boxes of greeting cards and at some point during the year we will have another chocolate drive.

We are always in need of donations or fundraisers organised by other people so please feel free to help if or when you can!

We are more than grateful for any support and help we can get.

As a result of everything that’s happened Billee has had a great month!

She got some new toys for Christmas, an amazing new bed, beautiful glasses, positive news from her Doctors and has spent some quality time with her 2 big sisters whilst they have been on summer holidays.

We look forward to this New Year with a positive attitude and full of hope and optimism for Billee and her development.

Please continue to follow her journey with us.......

19^thDecember

Billee seems to be having a good month so far!

She is healthy and at her happiest when she is trying to roll and move around the floor lately.

We are hoping to get her new bed this week before Christmas so fingers crossed.

This time of year is always a time when I find myself reflecting on what has been happening and what I am hoping to happen in the future.

Firstly I want to express my heartfelt thanks to all of you who read Billee’s updates and who have supported and helped raise money for her throughout the year.

I know I’ve said it before but without your donations and fundraising we wouldn’t be able to pay for Billee’s M.A.P.S programme and we are definitely seeing improvements from this.

Also I want to thank you all for your words of encouragement and praise. Sometimes a positive e mail can give me the boost I need on a not so great day!

Thank you also to our family and good friends who we wouldn’t be able to get through some days without! (You know who you are!)

Even though Billee has suffered from tonsillitis on numerous occasions this year I am more than happy with how her health has improved in general.

Thanks to the success of her feeding button and the ketogenic diet we have managed to slowly wean her off 2 of the 3 anti seizure drugs she was on.

Billee has now been seizure free for 17 months!

Even though I am aware that there seems to be a seizure ‘honeymoon period’ for children with Lissencephaly between 2 and 3 I am still very hopeful and optimistic that Billee will stay this way for some time to come.

Even though she is still unable to walk, talk or sit up unassisted I feel that her development has continued to improve in small but constant ways.

Her vision has improved; she smiles, laughs, babbles, listens intently, rolls over to her tummy and tries to push herself up by pushing her knees on the ground.

She loves having a bath, giving kisses, being cuddled by her big sisters and playing with switch adapted toys that her clever Daddy transformed!

She continues to be a joy to be around and remains the light of our lives.

Thank you to the following people this month for their donations-

• -Alan Sefton and Arsenal football club for their very kind donation. To have the support of Arsenal football club means so much to me.
• -Auntie Pat who helped organise the cheque from Arsenal.
• -My cousin Nick Doyle and his friends who braved the freezing cold weather in England to play their annual football / soccer game to raise money for Billee.
• -Sylvia Mula for donating the money she would have spent on sending Christmas cards.
• -Ray Wilkins, Phil McAleavey and Michael Rolls.

On behalf of Billee and my whole family we would like to wish everyone a happy, healthy and safe Christmas and New Year.

I look forward to sharing our lives and experiences with you all next year.

We pray for the families who have lost their children to Lissencephaly this year and want you to know that are thoughts are with you this Christmas.

We pray for continued health and development for Billee and a safe arrival for our new little baby girl in May!

We hope that she will help Billee progress and teach her some new tricks!

Happy holidays everyone!!

28^thNovember

Firstly I want to apologise for the late update this month. We moved house last week and only just got the internet connected.

The past month has been very exciting!

Apart from moving house we also had Billee’s fundraiser at Engadine Bowling Club last Saturday night.

Thanks to Vicki and everyone else who helped, the night was very successful raising just over $4000!

I would like to say a huge thank you to the following:

• * ‘The Hips’ band that did an amazing job and Pete the sound guy!
• * All the businesses and individuals that donated prizes.
• * Everyone who helped to set up and organise the night.
• * All of you that joined us on the night and helped to raise money by buying raffle tickets, balloons etc....
• * Last but by no means least my fantastic friend Vicki who organised and ran the whole night. This is the 4^thfundraiser Vicki has organised for Billee and every one of them has been a success. Vicki knows some amazing people who are always prepared to support Billee by either attending fundraisers or buying cards or chocolates and most of these people have never met Billee.

To all of you who are from Engadine your kindness is very much appreciated!

Also this month I would like to thank the following people for their very generous donations:

• * Elizabeth  Booth
• * Mick Bedford
• * Lawrence Smith
• * Newton Real Estate
• * Belinda O’Leary
• * Andrew Wayland
• * Ben Dominici

We got the results of all the Gastroenterology investigations and tests that Billee had done and over all they were good.

Her reflux is no worse than a normal child of her age but her stomach did show to take a little longer to empty.

This is not an unusual thing to happen on the ketogenic die.

She still has issues with her bowel movements, again a side effect of the diet so for that she is taking movicol.

This last month has been a very stressful one for me!

I found out about 6 weeks ago that I was pregnant and 2 weeks ago I had a CVS test to see if the baby had any chromosome disorders in particular Lissencephaly.

After a long very worrying wait I received a phone call late on Friday afternoon to say that the test results were back.

I am absolutely overjoyed to say that the baby has NO chromosome abnormalities at all and therefore we will be expecting the arrival of another beautiful little baby in May next year!

Billee is going to be a big sister and she is going to have a little partner in crime to grow up with and hopefully to help her learn and develop further.

So as we look forward to Christmas and a nice hot Aussie summer dare I say ......‘life is good!!’

The new house is great, Billee is still seizure free and very happy, her 2 big sisters are getting ready for summer holidays and we have a new little baby to look forward to next year.

On top of all that thanks to all of you we also have the money to pay for Billee’s next 6 month M.A.P.S programme in February.

Thank you so much everyone for supporting Billee!

Here is a photo the girls got taken today with Santa!

19^thOctober - BILLEE'S 3rd BIRTHDAY!!!

3 years ago today we were blessed with the most precious, bravest, strongest most amazing baby girl!

Yes 3 years ago today our beautiful little princess Billee was born.

Over the past 3 years there have been lots of tears, heart ache, stress, anger, upset and worry.

BUT the past 3 years have also been full of love, laughter, hope, joy, amazement and happiness.

In the past 3 years we have met some wonderful people, learnt about some extremely special children and realised what is really important in this life.

In the past 3 years our amazing little Billee has taught us so much more than we could have ever taught her.

She has taught us the true meaning of unconditional love and made us slow down and appreciate things in such a way we never did before.

She has shown her 2 big sisters how much she loves and adores them and they have learnt to notice her abilities instead of her disabilities.

She continues to be an inspiration to us all.............................

Happy Birthday Billee girl!! We love you more than anything in this world XXXXXXXXX

Billee has had another hospital stay this month but this time it was planned.

We spent last Friday night at The Childrens Hospital as she had a general anaesthetic so that she was able to have her teeth cleaned and a filling.

At the same time she also had a camera put down her throat and some biopsies taken to look for signs of reflux.

Billee also had a probe put down her nose for 24 hours and information recorded as a further test for reflux.

As well as this we will be taking her for a fluid gastric emptying study and a barium meal test.

All of this hopefully will give us some indication as to why she screams in what seems like pain quite often.

I would like to thank the following people this month:

• * How Bizaar Hair Salon @ Sans Souci
• * Uncle Pete’s Toys @ Brookvale, Castle Hill, Wollongong  & Manly Vale
• * Taren Point Public School & parents for buying boxes of cards
• * Everyone else who continue to support Billee by buying boxes of greeting & Christmas cards
• * Jo & Mark Jones
• * Auntie Aileen & Uncle Alan

As I’ve previously mentioned on Saturday 20^thNovember we are having a fundraiser at Engadine Bowling club.

Tickets are$15each and we still have some left.

The theme for the night is ‘Rockstars’ and ‘The Hips’ will be performing.

There will be raffles, lucky door prizes and lots of other great prizes.

Please grab some friends and come along and support Billee!

Billee continues to be alert and responsive and I definitely feel that she is benefitting from the M.A.P.S programme that we are currently doing with her.

We have now entered the second 6 month programme and we look forward to hopefully more improvements to come.

We are also looking forward to a nice hot relaxing summer for Billee and we pray that she stays well so that she can enjoy lots of swimming with her big sisters.

Thank you so very much to all of you that continue to follow our journey and support Billee in her fight with Lissencephaly.

We truly appreciate all of your support and words of encouragement and hope you will keep Billee in your prayers for the next 12 months.

As I’ve said before Lissencephaly is so unpredictable and who knows what will be in store next for our girl.

Whatever it may be I’m sure she will face it with the same fight and determination that she has shown every day of her life for the past 3 years.

Billee really is a little miracle in the making..........

25^thSeptember

I just wanted to give everyone a quick update!

Billee is doing great! She is recovering well from her recent hospital stay and is very happy.

As I mentioned previously Billee has been doing M.A.P.S (monitored multi – cortical activity for augmented pathways & synapses) therapy for 6 months now.  

This week just gone Claudie Gordon – Pomares has been here from Canada holding a 3 day seminar for the Autism advisory support service.

Glenn and I attended this, even though we took part in boot camp training sessions for M.A.P.S back in March we want to learn all we can about this amazing therapy.

On Thursday evening Claudie came to our house to assess Billee and was more than happy with her progress.

Billee was at her best! She has been like this all week, laughing, smiling, babbling and rolling onto her tummy and trying to move her legs and bottom.

I am so content and feel so positive that we have found THE therapy for Billee.

Every therapy is different and each child responds differently and to make things even more complicated no child’s injured brain is the same.

Therefore to find something that we feel is definitely having a positive effect on Billee and her development and also keeping her happy at the same time is huge for us.

Claudie’s website is www.unlimitedbrain.com for anyone interested in learning more about M.A.P.S.

I am not by any means saying this is a miracle cure for brain injuries but I am saying that for Billee we are seeing positive results.

By the way Claudie works with various different diagnoses from Autism to Alzheimer’s to ADHD etc...etc..

Next update will be on Billee’s 3^rdbirthday. 

Wow......... where did the last year go?!

19^thSeptember

After successfully managing to keep Billee out of hospital all winter, we hit spring and in she goes!

I had to call an ambulance on Wednesday morning due to her shaking, vomiting, high temperature and the area around her lips and nose turning blue!

After various tests we were told that she has strep throat and the swine flu.

She is now home from hospital and so far doing well.

We are keeping a very close eye on her and watching her temperature and breathing to make sure the swine flu doesn’t turn into pneumonia.

Last Tuesday Billee had an appointment at the cardiologist to check her heart.

When she was first diagnosed with Lissencephaly we were also told that she had a PDA around her heart (a small valve that hadn’t closed up when she was born).

Thankfully it seems that it hasn’t got any bigger and isn’t causing any problems or affecting her circulation.

Her next check will be in 2 years.

Billee was booked in to have a general anaesthetic a couple of days ago to have her teeth cleaned and a filling.

She would’ve spent the night at the childrens hospital but we obviously had to postpone it due to her being sick.

We are also waiting for an appointment to see a gastroenterologist regarding Billee’s feeding tube and to check to make sure she doesn’t have reflux.

Claudie, Billee’s MAPS therapist is currently visiting Australia from Canada.

She was due to come over yesterday to assess Billee but cancelled due to the swine flu.

We have rescheduled the appointment for Monday 27^th September.

Billee has been doing MAPS for 6 months now and personally I have definitely seen some improvements so I am very interested to see what Claudie notices.

We are also attending a MAPS seminar for 3 days this week.

This month I would like to thank the following people for their help and support:

• *Jack  Shaw for donating his guitar for us to sell and raising $150
• *Uncle Pete’s Toys at Brookvale, Castle Hill, Manly Vale and Wollongong and their customers
• *How Bizar Hair Salon at Sans Souci
• *Corie’s Hair Escape at Caringbah
• *CBINE Hair Salon at Sutherland
• *Flor Haneit from www.cardsfromtheheart.com.au for donating stickers with Billee’s banner and website on
• *Nicola O’Ryan – Smits for designing the tickets and flyers for our upcoming fundraiser.

Tickets are now on sale for our fundraiser on Saturday 20^th November at Engadine Bowling Club.

Its only$15 per person and there will be a band called ‘The Hips’ playing. It promises to be a great night with lucky door prizes, raffle and lots more.

Please e mail me asap if you would like tickets.

If you can’t come but still want to help we are also looking for prize donations. (Big or small)

We are also selling beautifully hand crafted boxes of Christmas cards.

They are only $26for a box of 30.

Unfortunately they are only available for pick up or drop off as I am unable to send them by post.

(Please see home page on Billee’s website for pictures of them)

After seeing Billee in hospital this month I was again reminded just how strong our little girl really is. She is the bravest person I know and it kills me that she has to go through everything that she does.

Despite everything thrown at her she continues to come out fighting and even manages to smile and laugh when we feel like crying.

She is such a huge inspiration to everyone that knows and loves her and I am honoured to be her Mum.

I am the proudest Mummy in the world to my precious little angel who is an absolute joy to be around.

I hope she inspires all of you with her braveness, strength, fight and determination........

Billee’s 2 sisters pulled her around the children’s ward in this cart and she loved it!

19^thAugust

We have all been sick for the past month!

Sore throats, coughs, colds etc.... so it’s no surprise that poor Billee got tonsillitis again and still hasn’t got rid of the cough that has plagued her for most of Winter.

Thankfully she has remained at home with us and hasn’t needed to be admitted to hospital.

Billee has been very unsettled and grumpy for a while now, some nights crying for hours. As you can imagine this is very concerning for us so we have been trying to get to the bottom of it.

We took her to the dentist yesterday because she grinds her teeth a lot and we thought maybe this was causing her pain. The dentist told us that her gums are very swollen which is a side effect of epilim (one of the anticonvulsants that she is on). She also said that she needs a filling! Although we brush Billee’s teeth regularly, because she isn’t eating orally at the moment her teeth are not staying as clean as they would if she ate food. The answer to all of this is that she has to have a general anaesthetic and have a clean and the filling put in. Due to Billee’s mild heart condition she will need to have antibiotics whilst this is being done to avoid infection.

We need to wait around 6 weeks for the appointment to come through.

Also this week I have been trying my hardest to get her an appointment with a paediatric gastroenterologist. There is a very good one that has been recommended to us but she is very busy!

We are concerned about her bowel movements and she seems to have a stomach ache especially of a night. Also we are wondering if she may have reflux. This could be another reason for her crying in pain?

On a more positive note she is in the process of being weaned off epilim. The whole process will be done in 2 stages and will take just over 3 months but so far so good!

This will also benefit her teeth and gums as the swelling should subside once the epilim is stopped.

We have booked Billee’s re assessment with the MAPS therapists for September and are very much looking forward to seeing them again.

They are coming from Canada to hold a seminar within the autistic community and will be visiting us at home this time.

We have also found someone to custom make Billee’s bed!

MAPS will cost almost $5000 and we haven’t got the quote for the bed yet but we are anticipating it to be in the region of $6000.

We are applying to The Steve Waugh Foundation for funding for the bed so fingers crossed that they approve this.

For MAPS we are fundraising ourselves once again.

With the recent chocolate drive we raised over $1000 and I would like to thank all of you that took part in this.

Especially to those of you that took heaps of boxes!!

Our next main event is on Saturday 20^thNovember at Engadine Bowling club. We have a local band called ‘The Hips’ playing who have volunteered their services.

I will send everyone who is local a separate e mail with more details very soon but for now please keep this night free as it promises to be a great night and as usual we are hoping to have lots of prizes etc...

I would like to thank Arsenal Football Club for their kind donation of £350.

For those of you that don’t know, my family and I are mad Arsenal fans. My grandad was a season ticket holder and he passed away 40 years ago. Since then my auntie, uncle, cousins, brother, mum and I have all held one at one time or another.

At the moment my Auntie Pat and Uncle Terry hold season tickets. Uncle Terry has MS and is in a wheelchair but they still attend every game rain, hail or shine.

It is nice to know that even thought we no longer live in England the club are still prepared to support Billee and help us in our plight.

Massive thanks to Auntie Pat for making this happen!

Thank you to the following:

• * How Bizaar Hair Salon in Sans Souci
• * Uncle Pete’s Toys in Brookvale, Castle Hill, Wollongong and Manly Vale
• * Curves gym at Caringbah
• * CBINE Hair Salon in Sutherland
• * Cories Hair Escape in Caringbah
• * Bobbi & Tony Conway (we love you!!)
• * All our family and friends

For all your continued support and constant enthusiasm.

I know I have said it before but if it wasn’t for everybody’s support we would be drowning!

We had another harsh reminder of the reality of Lissencephaly this month as another child became an angel. Please say a prayer for Rebecca’s family and hold your precious children extra close tonight.

Fly high angel Rebecca......

Even though Billee has been feeling unwell lately she had a great session today with her lovely visual therapist, Ana.

Below are some photos of Billee working hard!

19^thJuly

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.

20^thJune

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:

20^thMay

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...............................

19^thApril

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.......

19^thMarch

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.....

19^th 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 11^th 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....

19^th 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

19^th 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

19^th 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.......

19^th 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 2^nd 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

19^th 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...............

19^th 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 12^th 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!

20^th 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.

19^th 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!

19^thMay

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 5^thJune.

For all of you that are local please make a note on your calendar for Saturday 12^thSeptember. 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.....

19^thApril

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:

• * Julie and all her staff at How Bizaar hairdressers in Sans Souci.

• * The ManUtd supporters club of NSW for their generous donation of $500.

Please don't forget upcoming fundraising events (if you are local)

Wednesday 29^thApril at 7pm – Emma Page jewellery party at Taren Point Public School.

(All profits on the night donated to beautifulbillee.com.au)

Thursday 7^thMay – '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.....

19^thMarch

In 2 days time it will be the 1^stanniversary 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

6^th 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..........

19^th 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 (13^th) 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 27^th. 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 19^th

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!

19^th 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 19^th was Billee’s 1^st 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.