Realization

I was a naughty child. Not in a bratty way, more so in a tantrum for hours kind of way. It started when I was around 2 and didn't stop until I was close to 11. My behaviour was a mystery to everyone. Both my sisters were well behaved. I was contrary child and extremely strong willed.

(Im the middle one, with my neighbour Ben and older sister Bec)

I was put on every diet you could imagine - lactose free, gluten free, no yellow foods, no this, no that. My tantrums were so bad that the people that lived in the house behind my parents sold up and moved. Yes, I was that loud and annoying. The last week of every term at school, teachers requested that I be kept home as my behaviour disrupted the class.

(Front row, third from the left)

I saw just about every doctor in Brisbane trying to figure out if there was ANYTHING in the world that could be causing me to act out the way I did. Hearing tests, blood tests, behaviour tests, tests for ADHD and the likes. Nothing was ever found.

That is until my parents sent to to a psychologist, who did a few simple tests and found out I had an Auditory  Memory Disorder. Basically, my brain could not remember instructions and information I was told got scrambled. Its something I still struggle with sometimes even now. With the right intervention (teachers providing one step instructions as well as written material) my behaviour changed. The girl that could tantrum for hours was finally gone and after years of disruption peace was finally restored to our household.

So, what does this have to do with Aaliyah? Aaliyah is a strong willed child and is like me in so many ways. Imagine if you couldn't distinguish where a sound was coming from. Imagine your balance always being a little bit off?

Do me a favour. Cover one ear with your hand and block of your canal. How does it feel to have muffled sound on one side? Strange isn't it. Now try and imagine that there is NO sound coming from that ear. NOTHING. EVER.

And that friends, is the world that Aaliyah lives in. One that turns a shopping centre from a place of adventure into a place of unknowns. One where if her hearing ear gets blocked during a bath, renders her completely without sound. One that trying to distinguish where the car is coming from when trying to cross the road becomes that much harder. One where trying to understand what someone is saying to you in a crowded room becomes near impossible.

So often I forget about Aaliyah's "impairment". And then she acts out in the shopping centre carpark, and I tell her off, forgetting what a scary place it must be for her. Telling her of for not listening, when in reality, there is a lot of background noise, her hearing aid battery has run out and I'm in a different room. Explains why sometimes she acts out. Not out of disobedience or defiance, just out of frustration.

And that is why we are working so hard to give Aaliyah what you and I take for granted. x

Fundraising

As I said in my last post, I want to go into further detail in our fundraising plans for this year. We have big ambitions this year and with a lot of hard work and discipline I know that with your help we can achieve it. In November last year we held a trivia night. It was a huge success, raising close to $6000. We have so many people to thank for helping put that night together and making it the success it was. Pretty much everything was donated on the night from the hall hire, chips for the tables, prizes and auction items. We had my parents neighbour do the auctions as that is what he does for a day job and friends that run trivia nights on a regular basis run the trivia. The only downside was that it was pouring rain, was stormy and we forgot about a PA system. We sold nearly 100 seats and it seemed to go very well. I want to say thank you to every single person and business that donated or contributed to the night in any way. It would not have been possible for our night to be such a success without YOUR help.  I will post photos as soon as I get my hands on some. I was too busy on the night to take any but my sister took some so I will endevour to get them of her.

Because the night was such a success we are planning on holding another Trivia night in April. If you are interested in helping with the night or coming please shoot me an email (amyjperdomo@hotmail.com) and I will be in touch.

Now on a different note, I want to talk about our special Microtia/Atresia community. We are so blessed that Aaliyah was not born a few years earlier. The services and information that we have access to now were not around a few years ago (by a few years I mean in the years before Aaliyah was born).

Ten years ago, children like Aaliyah had limited options. They were not offered hearing aids, not offered speech and language support. Their parents were told to go on with life as normal. If it wasn't for people like Simone from the Hear and Say (Hi Simone, I know you read this), as well as places like the Hear and Say centre, we would be lost.

Its funny, when Microtia/Atresia parents get together the conversation can go a little like this :

Hi Im Amy, my daughter Aaliyah is 3 wit right sided Microtia/Atresia
Hi im Jane and my son Jon is 2 with bilat Atresia

There are so many different types of Microtia/Atresia. It is facinating and daunting, no wonder the Doctors in Australia do not know what to think!!!!!

And that my friends is my 2 bobs worth this Wednesday night.

Oh and I will be entering Aaliyah into Sunsuper "Dream". competition. It is a votes based competition, so I will be all over facebook asking you to vote and share. If Aaliyah wins Sunsuper will donate $5000 towards Aaliyah's operation.

Big things ahead for a little girl

Happy New Year Folks, we hope you had a fabulous Christmas and this New Year is treating you kindly.

I am trying so hard to wrap my little head around everything that I want to share. We have big things planned for Aaliyah's Journey this year. A few nights ago I sat down and tried to map out exactly what I wanted to achieve this year for Aaliyah's Journey. Putting pen to paper was daunting. The task ahead seems so overwhelming and there is so much work to be done. But we are prepared. We will work and we will get Aaliyah to the states!!!

Firstly, I sat down and did a month by month breakdown of what I want to achieve or the fundraising activities that we have planned. We have enough fundraisers for the next year. We were hoping to get Aaliyah to California this June/July/August (we need to go during summer due to Aaliyah's asthma). However even though she is now 3 years old she still is yet to meet the weight requirement.

Which bought me to How can you fatten up a fussy 3 year old WITHOUT using junk food. We have restarted her on sustagen and have added an iron supplement to her multivitamin. We are trying to offer her more high (good) fat foods such as yogurt. We have been using ice blocks as a reward for eating her dinner. Aaliyah is extremely active however so even though we fill her up, she will probably just burn it of, but we are trying none the less to get her weight up. She needs to be 15 kgs for the operation and she is only 13. So it looks like it will be May/June/July/August next year. But thats ok. It gives us time to fundraise and get more prepared (none of us have passports that are in date!!).

I am also taking time to write to the local newspaper etc as well as contact rotary and the lions. We are continuing to sell our Cadbury fundraiser chocolates and hold our monthly garage sales. We have 2 trivia nights planned and a big auction dinner. Like I said, its going to be busy and its going to be tiring but its going to be worth it.

Enough words for now. Here are some photos of the beautiful little lady herself. We have enjoyed having a break from our usual activities as everything stops over summer and I have had a wonderful six weeks of work. But we are more than ready to get back into the swing of things now (well the girls activities, I could quite happily stay away from work!!!)

 Aaliyah and her sister at Seaworld - We had to chose between a hearing aid and a hat - it was such a hot day that the hat won. (We have also had terrible troubles with her hearing aid and the one we have at the moment is a loaner from Australian Hearing whilst hers is being fixed!!)

 Aaliyah turns 3!!! We celebrated with a small tinkerbell party (her request), family and her best friend Olivia!!

 She was so happy to meet Dorothy the Dinosaur at Dreamworld a few weeks back!!!

Aaliyah and Hadassah enjoying their Christmas Present from us and the extended family (a 15ft Trampoline) (no wonder she wont put on weight, she wont stop bouncing!!!) 

If you have made it to the end of this post well done. 

Next up more about Aaliyahs speech and language plus more details on our fundraising and how you can help!!!