Good Intentions.....!

Well so much for me blogging daily or even weekly, it's been almost 6 months!!

So much has happened.........

Billee is doing well, we received the results of all the tests only to be told that everything is normal.
This is a good thing of course but it didn't explain the pain she seemed to be in.
We have started to see a Kinesiologist and have just had more tests done!

These included a hair analysis, stool test and finger prick blood test for candida.
It seems that the only thing to have come from these is that Billee has an in balance of good and bad bacteria in her gut.
We are now giving her a pro biotic to help balance this out.

She has also started to see an osteopath and continues to have her reflexes integrated by her kinesiologist.

Billee also started wearing glasses in the past 6 months.
She only wears them sometimes and at the moment we are not convinced that they make too much of a difference.

Three weeks ago Billee started preschool for 1 day per week.
I'm happy to say that she really seems to enjoy it.
She has hydrotherapy whilst she is there and that alone for me was a huge draw card as I've been wanting her to do this for ages but finding a suitable class was proving to be hard.
Glenn stays with her through hydro and then also during the day she has speech therapy and a little OT.
She seems to enjoy the story and group times. There are only 4 children in her class and 1 teacher and a helper so I am very pleased with that.

As you know Billee has been on the ketogenic diet for almost 18 months now and we were in the process of weaning her off the 3 anti convulsants that she was on.
This is a very long process and we made it all the way to the lowest dose of the last drug and only had 1 week to go until she was drug free.
Unfortunately she had 2 seizures in the last 2 weeks so we have now increased the lamictal back to a reasonable dose.
We are now praying that this will be enough to keep the seizures at bay.
After seeing Billee having a seizure (after being seizure free since July 2009) we have decided that having to be on drugs isn't the end of the world if it means we get to keep our baby girl!

Billee continues with her M.A.P.S therapy program and in my opinion we continue to see little improvements.

We moved house in the last 6 months and our other major news is that Billee is going to be a big sister in 6 weeks time!
I am pregnant with a little baby sister for Billee.

We are hoping and praying that as they grow together the baby may teach Billee and encourage her to develop a little more.

So things are hectic at the moment at our house.
This pregnancy has been the worst for me! I have had every complaint possible and have gained far too much weight for my liking!
Not to mention how uncomfortable being pregnant during summer has been!

I am counting down the weeks left and praying for the safe arrival of our new baby.

I have been very frustrated at not being able to do the normal things with Billee and I can't wait to get my energy and motivation back once again!

If any of you want to read more about our journey with Billee and if you find it's been a while since I have blogged please visit her website which I update monthly.

It's www.beautifulbillee.com.au

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......