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.