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.
Wednesday, March 31, 2010
Wednesday, March 24, 2010
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.
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.
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.
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