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.