Monthly Updates

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.