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