Stronger & stronger....

Billee loves her swing!
We have it hanging in the doorway between the lounge room and computer room.

I've noticed lately that when it stops moving she leans her head and body forward and tries to make it move again.
The control she has of her head is amazing and it's improving all the time.
She is actually able to hold her head upright and then lean forward and then backwards again with nothing supporting her head.

She continues to be mesmerised by her own hands.
She looks at them constantly, moving them around and even laughing at them sometimes!

She is also making lots of great eye contact lately and really trying to 'talk' to us.

All these things may sound so insignificant but for Billee they are huge. Every moment of even the slightest improvement is magnified 1000 times to us because it shows us that she is heading in the right direction.
Even if it is at the slowest speed. We can wait for her, we are in no hurry.

She is the most amazing little person I have ever had the pleasure of knowing!
And what makes it even better is she is my amazing little person!

More hospital appointments...

Billee had the final (I hope) test today in relation to her possible reflux / gastro issues.
She had a barium meal test.
This is where they put a yukky liquid into her tummy and then X ray to see if there are any blockages etc...

Its seems everything went well but we will get the results next week.

As well as this she had a gastric stomach emptying study done on Monday.
Two weeks ago she had a camera put down her throat to check for scarring or other signs of reflux and biopsies taken.
At the same time she had a 24 probe inserted into her nose and I had to record info like when she fed, slept, coughed etc....

Hopefully now her Gastroenterologist will have a full picture of what is going on and we might get some answers.

Billee is fast asleep in her bedroom at the moment after spending most of the morning screaming!

I hate days like today when every thing gets messed up.

But Billee is such a strong little girl she takes it all on the chin....Bless her.

Birthday girl

A little bump in the road

On Friday I could feel myself getting a sore throat and then on Saturday I woke up feeling awful.
I went straight to my Doctor because I knew it wasn't just a sore throat and I was right I have a bad case of Tonsilitis!

The last time I felt this bad Jaymi was 6 weeks old (she's 10 now).
I spent all day Saturday in bed and only got up on Sunday because we had Billee's birthday party.

I struggled through the afternoon, I'm not sure how!

Today Glenn took Billee to the hospital very early as she had a gastric stomach emptying study booked in and Mum and Dad took the girls to school.

Surfice to say Billee's programme has suffered as a result.

Glenn has been great at holding everything together but he isn't me!! Haha!!

I feel so frustrated because I hate being ill and when I am ill I never remove myself from the family and spend all day in bed.
Seriously though I have had to this time.

I'm hoping everything is back to normal by tomorrow.

Chat chat....

Well the new exercises are going well!

Billee has been really trying to talk lately. When I talk to her she looks me right in the eye and moves her mouth like she is really trying to talk back!

We decreased her anti seizure meds again this week. In 3 weeks time she will be off the second one and then we will only have 1 left!

We're having a little party for her on Sunday for her birthday so I will add some new photos.

New 2 week programme

I spoke with Claudie Gordon - Pomares this morning at our fortnightly phone appointment.

We discussed my recent report, Billee's reactions to the last set of exercises and her new programme for the next 2 weeks.

We always start with the same things:

- Smell & gentle claw every hour to increase seratonin.
- Classical music
- MAPS 1
- Stretches

This time we are continuing with working on rolling and kneeling.
We also have 3 therma lines / finger lines and a warm dough exercise.
Also an exercise working with art and texture.

As I usually do, I typed out a record keeping sheet and blue tacked it to the wall so that we are able to tick stuff off as we do it.

Hubby and I then go through the programme once together to ensure we both know what to do and we usually video some bits to send to Claudie if we are unsure.

This time she would like videos in a couple of days so that she is able to see Billee's reactions to the new set of exercises.

We will start this tonight and see how she goes......

Happy 3rd Birthday Billee!!

Passing the dangerous time line of two years is a major accomplishment for a child with Lissencephaly. The lack of connections between the major centres of the brain and poor motor connectivity puts the child at risk.

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

Summarising the past 6 months on MAPS

In order for me to move forward and blog regularly I feel it very necesary to summarise Billee's MAPS programme and progress over the past 6 months.

Claudie explained to me that the treatment plan has been to focus, first, on her serotonin production to allow the growth of new cells, building good communication between the two hemispheres of the brain using the corpus collossum and cerebellum. No serious rebuilding exercises would be efficient without the fuel which is serotonin, and the core communication tool.


We used as the ground foundation of the treatment things as gentle as smelling nice aromas, soft touch on her body and face, and of course, listening of classical music. The first exercise used contrast of temperature, all very mild, to the hands, then teaching Billee's brain about textures.

 We do what we call gentle stretches. MAPS takes care of the entire body and movement of the joints is vital for a non mobile child. 5 times a day, we have a set of soft stretches involving the hips, the ankles, the wrists and the spine. We also have a soft stretch of the arm.

Every two weeks we have a brand new set of games for her communication skills, for her general development, for the control of the hand, arm and legs. We have a serious plan around Billee's legs which cannot, as we start the treatment, be brought straight and close to each other, which is key for standing and walking. Four months into the treatment, we are able to do this and consequently can include new exercises for the leg and the foot, with new lines of communication between the brain and the foot.

 The strategy in MAPS is to teach the brain to send the right messages to the body. We do not work on training the body with the hope this training will change the brain. This is very tedious and demanding and does not fit our family energy. With MAPS, we tell the brain where the foot is, how it feels, and gradually we can see the brain telling the foot to do tasks which are normal, such as retrieving to the contact of a funny texture.

We worked on weight bearing in a very novel manner and without causing any stress or pain to Billee, using the laws of physics and pressure instead of controlled standing.

When Billee started to show good response to the exercises, we started the day program which could be compared to a home school pre K program adapted to her, with play, reading, working out.
Billee has learnt new but essential functions such as smelling. She has very particular fast and short sniffs as soon as we bring a smell she likes to her nose.

She is full of energy and lets us know when something is not to her liking.

After Claudie's second evaluation during which Billee showed all what she had learnt and also how much she was ready to do more, we increased the level of body exercise and demand, still in a very moderate tone and respectful of Billee's reaction and response. We are now working on the voluntary movement of the arm and Billee is now showing very serious voluntary movements in exercises where she is kneeling and moving with assistance toward the mat.

Six months ago, Billee was poorly mobile but most importantly, poorly developed in voluntary movement. She was aware of her surrounding and communicating with some sounds but had some difficulty tracking and focusing visually.

 After six months of MAPS, some major developments have occurred :

 -her eye tracking has improved and she is able to hold eye contact for several minute while "conversing". Her better facial tone allows more facial expression

 - she blows rasberries and has several mouth muscles and tongue sounds.

-she discovered her hands visually as well as dynamically.

-her back tone and control of back, side and neck muscle has improved if lifted from the mat she responds with several appropriate organised muscle contractions.

-she has now control of the arm movement in a protective motion when lifted from kneeling position and lowering toward the mat. This is a crucial movement demonstrating the connection of the brain to arm and hand.

- her response to tactile information to hand and foot is appropriate and normal.

- she added sounds to her vocalization.

I hope this explains as much as possible for now and that as we move forward I am able to record observations as they happen.

It's been a long time....

I know it's been a long time since I blogged......nearly 6 months!

I've actually been prompted into action by Kim who e mailed me yesterday telling me of another mother also doing MAPS with her child.
Apparently she wanted to start a blog about their experience with MAPS and Kim had helped get her started.
I have now decided to not only write in this regulary but also to publish it so that others can also read it (scary thought!).

My next post will basically summarise the past 6 months on the MAPS programme and then hopefully from then on I can record things as they happen.

Day 34

Billee has been shouting all day!
Honestly she has been so noisy today which is obviously fantastic.
Last night she said something, we're not sure what it was but it was just a really different, 'normal' babble sound unlike her normal noises.
Glenn and I just looked at each other in shock.
I'm so glad we both heard it otherwise I wouldn't have believed it!


It was so funny because it really meant nothing but to us it meant everything!


A couple of days ago Billee was laying on her bed and I could hear her laughing.
I crept up to the door of her bedroom and peeped in.
She had rolled from her back to her tummy and was moving her leg up and down.
She was finding this hilarious!
Naturally I got the camera and videod it!


I've been thinking lately about other peoples perception of me.
When we were first told of Billee's diagnosis I couldn't speak about it to anyone without sobbing uncontrollably which usually ended up in the other person in tears also.
I never thought there would be a time when this didn't happen.


Now when I talk to people about my 3 girls and I say Billee has a very rare brain disorder I say it so matter of factly that I wonder what people must think?
I see the look on their faces when I tell them that she has a seizure disorder, is visually impaired and tube fed and doesn't crawl, walk or talk etc...


Some people don't really know how to react. Most people are very sad.
But they don't know Billee and how wonderful she is.


The truth is even though I will never accept Billee's prognosis I accept that she is who she is. I haven't cried for ages about her not being 'normal'. I'm sure I will shed lots more tears but at the moment I am just so thankful that she isn't having seizures (touch wood!) and that she is healthy, happy and aware.


I feel very lucky and blessed to have her in my life and I know that this has happened to her for a reason. She is teaching us all so much, even her big sisters. She is making us all better, more compassionate people.

She is a miracle in the making............

Day 29

In my opinion Billee has been responding well to the MAPS games and exercises so far.
She has started to be a lot more aware of her hands and looks at them alot. She also moves them whilst looking at them but not in a controlled manner yet.
She is improving all the time with her rolling and practices almost every time she is on the floor.
I also feel that verbally she is really trying too.

I have been making videos of us doing the exercices and sent them to Claudie for her feed back which has been a fantastic help.
She said Billee's reaction to the water game was very powerful. She was also able to give me some advice on how to perform the game which was a great help.
She thought Billee's response to the vision exercise was also spot on as she is able to look at the art work and then briefly look at the lady bug at the top of the page.

I am very pleased and encouraged by Claudie's comments and observations.

She also said she is right on track for any developments. Firstly with her head control and hands and then with her movement.

I will speak to Claudie on Wednesday of next week and this is when she will give us new exercises that will hopefully continue Billee's progress.

Also I googled 'brain plasticity' and found lots of very interesting reading basically echoing what Claudie has already told us about how the brain can repair itself.

Why don't any of the nurologists tell us this??
They obviously know about it as its been known and written about for about 70 years!!

Day 24

The water game is proving harder than we first thought! Just getting Billee to want to put her hands in the water etc.... at the moment it is def needing two of us to juggle things!

She is trying so hard to roll over a lot now but is still getting her arm stuck underneath her.
Last night she (we!) was awake a lot of the night firstly talking, babbling etc.. and then crying!
At one point she was really trying to roll over and then once we helped her to go all of the way she stopped crying. It was kind of strange like her brain knew what it wanted to do but her body couldn't do it?

Maybe this is where ABR will work well with MAPS in the future.
MAPS creates the pathways and ABR strengthens her body.

We are continuing with 2 hourly ice, claw and smell and also 2 hourly claw and smell.

She is looking well at the art work but only following the red object above it occasionally.

Now I am going to tackle the water game again!

Day 20 - water game

Well I tried the water game with Billee yesterday and it ended up being a bit awkward!
Firstly I had her sitting in her high chair and the 2 bowls on the tray and she really didn't like having her hands put in the water.

I made the mistake of doing this whilst she was feeding so this could have been the reason why she wasn't too keen.

I am now looking at the shape of the bowls I am using and the position Billee was in to see if I can improve things and hopefully make this exercise a pleasurable experience for her.

 

The vision exercise was sucessful and she did well at this.

As for the spa treatment we are starting that today as we had a busy day yesterday with our visitors from England.

 

I am very excited to see more changes in Billee and I feel very hopeful that MAPS will indeed help her.

 

Day 19 on MAPS

I was hoping to post daily with Billee's progress as the tiniest things can happen all the time. Unfortunatly its now been 1 week since the last post!
We had to send Claudie a report at the end of last week so we had to really think of any improvements in Billee no matter how small.

We realised the following things:

* She is moving her legs and body more especially whilst laying on the floor.
* She is more vocal and is shouting (babble) a lot.
* She is laughing more.
* She seems to move her head forward whilst sitting in her pram or when I'm putting hair up in a pony tail.
* She has started to put her left thumb in her mouth. Previously she could only suck the side of her hand.
* She touches her head / hair with her right hand more.
* She looks at the art pictures and will hold the look for 2 seconds.

In the last few days Billee is also trying her hardest to roll over. She starts on her back and rolls onto her stomache but gets her arm stuck under her body.
Yesterday she was laying on her tummy and I helped her put her arms out in front to lean on and I lifted her legs so that she was kneeling on them.
She has never had the strength to do this. In the past she just flops back down and her legs spread out wide.
She actually stayed up on her knees for a few minutes. We were so excited!!

After speaking with Claudie yesterday morning she gave us some extra games / exercises to do with Billee.
These included tracking a red object whilst looking at art work, spa treatment and the water game.
Spa treatment is designed to be an ultimate seratonin booster and for this we will be giving Billee a nice warm bath and wrapping her in a warm towel afterwards. This is then followed by a hand and foot massage.

For the water game you have 2 bowls of water, one with warm water and one with cold tap water. We then have to place Billee's hands in the bowls at the same time for 3 seconds. We need to repeat this 4 times but swap the bowls over each time.
After gently wiping her hands we then give her 2 objects to hold on to (eg... a cotton ball and a pine cone).
Next we get a small marble and draw lines from the palm of her hand out to every finger and back.

We will start the new games today so I will post tomorrow with an update on how Billee managed them.

Other than that Billee remains very alert and responsive. She had an off whingy day on Monday but we have family staying with us from England at the moment and I think she was a little overwhelmed and confused.

Day 1 to Day 12

I am going to pretty much sum up the first 12 days of the programme here and then as we move on I will blog every couple of days.
We started on a Friday and after 3 days Billee started to get a temperature.
She had the temperature Sunday, Monday and Tuesday nights. We took her to the Emergency Department of our local hospital on Tuesday night as panadol wasn't helping any more.
She ended up spending a couple of days in the Childrens Ward as she had an ear infection along with the temperature and was started on antibiotics.

Claudie pre warned us that she would have a short stormy period before things improved so we were not too surprised.
By day 7 things were back on track.
We have been doing MAPS 1 twice a day, smell and claw 2 hourly and ice, smell and claw also 2 hourly.
We have also been putting the smell on Billee's pillow when she sleeps and listening to classical music in 10 minute segments throughout the day.
Billee sleeps as and when she needs to as this is when the brain repairs itself.

We are now up to day 12 and I would say the follwing remarks about Billee which may or may not be due to the MAPS programme:
Almost every time Billee smells the strawberry scent she moves her lips and seems to swallow.
She is babbling lots, actually shouting.
She is smiling lots and laughing.
Her visual aid commented today that she was very good at moving her arms up and down when prompted to by her during a song.
She is moving her legs and arms alot and touching her hair with her right hand more.
Billee is putting her left thumb in her mouth. Previously she only put her left hand on her mouth.

As we move forward I will record things in more detail.

MAPS Therapy

I discovered M.A.P.S after it was mentioned on one of the yahoo support groups I belong to.
After contacting the centre in Canada they told us that they had not only treated a boy with Lissencephaly but they were coming to Sydney for the first time the following week.
Well I believe in signs and things happening for a reason and I couldn't ignore this sign!
So the following week there we were in a house in Liverpool learning about MAPS.

A lovely lady who started doing MAPS on her daughter 5 months ago paid for Claudie and Kim to come over to Australia as she has been having such amazing results with it.
She then paid for the boot camp training but invited other families along free of charge.
There were maybe 8 families at the boot camp. Most of them had children with Autism and one little boy had Cerebral Palsy.
All of them were impressed with MAPS and wanted to try it on their children.

We met with Claudie and Kim for an assessment with Billee and they showed us the different exercises and gave us their opinion on what improvements we might expect to see after doing their programme.
They also asked that we stop any other therapy Billee is currently doing for 6 months.

Therefore we are stopping ABR and AIAHP for the next 6 months so that we are able to give MAPS the best possible shot we can.

I will explain in much more detail as I go forward what is involved in MAPS.
Basically MAPS is a programme that works on increasing seratonin and dophamin levels in the brain which then helps to create new neuron pathways and cell migration.
To be honest at the moment I'm not even going to share this with anyone else but as time goes on I will.

A little bit of history

Billee is our beautiful and precious 2 year old little girl who suffers from a very rare brain disorder called Lissencephaly.
Lissencephaly, which literally means smooth brain, is a rare brain formation disorder characterised by the lack of normal convolutions (folds) in the brain. It is caused by defective neuronal migration, the process in which nerve cells move from their place of origin to their permanent location.



The surface of a normal brain is formed by a complex series of folds and grooves. The folds are called gyri or convolutions, and the grooves are called sulci. In children with lissencephaly, the normal convolutions are absent or only partly formed, making the surface of the brain smooth.


The prognosis for children with lissencephaly varies depending on the degree of brain malformation. Many children show no significant development beyond a 3- to 5-month-old level.

We believe in giving Billee every opportunity possible to reach her full potential.
We felt some time ago that standard physio and OT just didn't seem to be helping and we went searching for other more effective therapies.

Billee recently started M.A.P.S. and this blog follows our journey with this therapy.

Billee also has a website which is updated monthly :
http://www.beautifulbillee.com.au/

So here goes with the whole blogging experience.......