Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Sunday, February 27, 2011

First day at CPEC

Last week Wednesday Ellie and I had our first morning at CPEC . I have to admit I was excited, nervous, & tired. Ellie decided that on that morning she would start her day at 5 am...
Maybe she too was excited about CPEC.

There are 8 other kiddies in Ellies group, ranging from 18 months to 2.5 years. There is also about 4 therapists in the group too. I have to admit as it was our first session, it passed as a bit of a blur. There was so much going, and so much for me to take in.

The morning started off with doing some sitting. Each child has all their own equipment, one of them is like a big wooden bed, and to do sitting the child sits on the floor in front of it on non slip material. Ellie wore her leg wraps whilst she was sitting and this seemed to help. We then had about 30-4o mins to choose what sensory activity to do, the options were trampoline work, fitball work, rocker board etc. Ellie quite liked this... But this did not surprise me. Ellie has always loved movement etc.

After this we did some tummy work, with me trying to help Ellie to creep forward on her tummy. This was where really started to get unhappy. To be honest I think she was more tired because she was up at 5am, than not liking what she was doing. I gave Ellie a cuddle to calm her down and she feel asleep on me. She had a 30 min cat nap on a matress on the floor. I actually didnt think she would wake up... but she did and the proceeded to do the rest of the morning, which was snack time, and then some singing and hand work

I really did enjoy the morning... and yes at some stages I felt like a fish out of water... There is alot of new things for me to learn too... but that makes it all the more exciting

Tomorrow being Monday we are back at CPEC again.

Here is a pic of Ellie, fast asleep at CPEC..... She was exhausted!!!

Thursday, February 17, 2011

Update: Ears and Eyes

This morning we had a appointment at Australian Hearing to get new moulds taken and new hearing aids as one of Ellies hearing aids ended up in the wash. I mentioned that Ellie hadnt been responding as well with her aids over the last few month and asked if her new hearing aids settings could be adjusted to make them louder for Ellie. We also discussed Ellies hearing test results, from her hearing test at the Royal Childrens Hospital last week. In this test and also in the last test Ellies hearing loss is coming up as severe...

Which was a surprise to me as I thought she was in the mild - moderate catergory. They suggested a different type and brand of hearing aid, as the ones that Ellie had, do not have enough power for a severe hearing loss and could not be made louder. So...... we are getting new types of hearing aids.... They said that Ellie will really notice a difference with them.... We get them on 1 March

This afternoon we had an appointment with Ellies Ocularist. This is a lovely french man that makes Ellies glass eye. As it has been 6 months since Ellie got her last glass eye, he wanted to see her to see if there was the possiblity of making another one, a bigger one. His thoughts were that he would have to put her under GA to take a mould to see exactly how much more room was in her eye socket. However with saying that, he also said that if there was more room, there wouldnt be alot more room than what there is now... So wouldnt suggest putting her under a GA. His thoughts were that we should go back to see one of Ellies other specilists, her eye surgeon.

He wanted us to discuss with him the below points and get his thoughts:
  • Do we get another eye expander from Germany? Ellie has had this before to create more room in her eye socket
  • Chat about cranial facial surgery (As not only is Ellies eye socket smaller, her bone structure around her right eye is smaller and flatter) Is this an option yet?
  • Create a long term plan for Ellie with the goal being to get Ellies face as symetrical as possible.
We have an appointment with Ellies eye surgeon on the 10 March to discuss these points and work out the next step for Ellie

Tuesday, February 15, 2011

Saying goodbye is never easy...

As Ellie is starting at CPEC next week and Bayside Special development school in term 2. This now means that we are no longer eligible to receive therapy through Early Intervention Services (government funded)

For the past 18 months Ellie has been receiving physio, occupational therapy and speech therapy through Specialist Childrens Services. I honestly dont think that Ellie would be where she is today and doing what she is doing without the great support of these therapists.

Yesterday Ellie had her last session with her fantastic physio Trish. I was sad to have this last session, its always scary after trusting someone for so long, to say goodbye... But with saying that as much as I am sad about saying goodbye to Ellies therapists, I am also a little bit excited about 'what the next chapter' holds for Ellie.

Going to CPEC means, twice a week for 3 hours Ellie will be in a environment, with other children with either Cerebral Palsy or other condtions/syndromes. Where she will receive constant support, therapy, and guidance to further her skills and confidence.

It also means that I get to 'get out' and meet more parents in similar situations.

Yes... We will be busy
Yes.... Ellie will be tired and possibly scream for the first few

But it will all be worth it.....

Here is a pic of Ellie after she thought it was a good idea
to throw her lunch all over herself..
This photo makes me smile!!

As you may know Luke, Me and a friend Tracey are taking part in the 5.2km fun run, called RUN FOR THE KIDS. This is to raise money for the Melbourne Royal Childrens Hospital. We had a fundraising goal of $500. So far we have raised $160.

To donate please visit the below URL:

Friday, February 11, 2011

Running to raise money for the Royal Childrens Hospital

Every year the Roayal Childrens Hospital has an event called the Good Friday Appeal.

The Good Friday Appeal is a unique fundraising activity that brings together people from all parts of the community in a special way. The common goal is to raise money for the Royal Childrens Hosptial in Melbourne.

We have been at the RCH a couple of times with Ellie, her amazing peadiatrician is also based there. My cousin cameron has been there many many times for heart surgery and follow ups. The RCH has such an impact on the lives of sick children and their families.

To help in a small way Luke, me and a friend are taking part in the 5.2km Run for the Kids 2011 on the 17 April to raise money for the RCH

We have set a fundraising goal of $500. Please visit our fundraising page below, where you can donate on line. I can also send out pledge forms. Please let me know if you would like some of these.

Click on the link below to be taken to our online donation/fundraising page

Wednesday, February 9, 2011

Papparazi.... Snapparazzi!!

Were continually taking new photos of Ellie... here are some more new ones... I really think she is looking grown up

Ellies 'way too cute' bathers!!

Thursday, February 3, 2011

Weight update..

Ellie had a weight check yesterday. She has gone from just under 8kg's (17.6lbs) to
8.6kgs (18.92lbs) in 2 months. This is a massive 600gram increase. I cant remember the last time that Ellie put on that much weight.

Maybe all the custard, cream and milo deserts are starting to help her...

Wednesday, February 2, 2011

I wonder what she thinks...???

Lately I have had a lot of people ask me "How do you know if Ellie likes something" and "How do you know if she dislikes something" When you have a child that is non verbal I think it is a mixture of 2 things that help you work these out.

1. As Ellie cannot verbalise her thoughts she is forced to let us know in other ways
2. As a parent we have had to become aware of what she does in these situations.

For example when Ellie likes something, she laughs, shakes her head, moves her hands or feet or whole body, or grins with anticipation.

When she doesnt like something she can scream, screach, arch her back, try to throw her body out of the highchair, pram, chair etc.

Does this paint a clear picture??

Working out what Ellie likes & dislikes is not hard to do....

However one thing that has entered my mind alot lately is working out 'what she thinks', 'what goes through her head'

There are many times I catch her looking at Me, Luke or another family member, a toy, Tv with a look on her face. A look of knowing... knowing that this person is 'one of her own', knowing that this toy is her fave and she shakes with excitement... But what does she think??

I would love to know the thoughts that run through her head?? In time we are hopefull that Ellie will become somewhat verbal and that she will be able to verbalise her thoughts.... But in the meantime we will be left wondering, and left to work out if we can deceifer her thoughts through her actions