Tuesday, 24 September 2013

Q & A

I thought it was about time I did a Q and A for any new followers of Aaliyahs Journey, to answer any questions you may have and for you to get  to know the family "behind the screen".

I guess the number one question we get asked when we tell people about Aaliyah's surgery is "why the states?". After seeking the advise of MANY health professionals, not just from Brisbane (where we live) but around Australia, we were not satisfied that they would give us the results we were looking for for Aaliyah. One doctor told us to "chop of whats there and put a plastic one on". One told us that we should not touch it as it should be Aaliyah's decision if and when she has surgery. None were able to answer our concerns of Aaliyah starting school, not only with an abnormal looking ear but with a significant hearing impairment.

We were so fortunate when Aaliyah was born to be linked in with a Hearing Loss Support Network. A lovely social worker visited us at home and gave us some options in regards to support available for Aaliyah. She also told me about another little girl that was born with the same condition as Aaliyah and gave me her mothers phone number. It took me a few weeks to get the courage to call her, but we are ever so grateful we did. That was when we found out we had options for Aaliyah. We wear able to link in with  The Hear and Say Centre.
Aaliyah with Dr Roberson and Dr Reinisch, The doctors that will help restore her hearing and give her a normal looking ear,

Making the decision to fly thousands of kilometers wasnt an easy decision. We have done our research. Consulted many, many Doctors. We have looked at our options in Australia. No one was able to give us what the Combined Medpor/Atresia Repair will give Aaliyah. I asked Aaliyah's ENT (Ear Specialist) why he doesn't perform it and his answer was simple. Microtia is too rare and the surgery too complicated to make the surgery financially attractive. In other words, there isnt enough money to be made.

We have a tentative booking for August 2014. Ideally we would love for the surgery to happen before then. She could actually have the surgery now, however we do not have the finances to make that happen. We are so determined to make it happen by August 2014. 

We have to be in California for 6 weeks, in order for Aaliyah to attend her various follow up appointments. We have have chosen (in collaboration with the Doctors) August next year for several reasons. It is the northern summer. As Aaliyah suffers from chronic Asthma, we felt it was important for her to be travelling/having her surgery when the weather is warmer. Hopefully this will avoid any possible Asthma Attacks and subsequent hospital visits. 

I also wanted to clarify that whilst we are fundraising for her surgery, the airfares and the accomodation, we are NOT fundraising for our meals/living expences/spending money. We are intending on visiting Disneyland etc whilst we are there, however we are not raising money so we can "have a holiday". 

The change in the exchange rate and the increase in the surgical fees means that we have had to up our origional goal of $90 000 to $100 000. We have looked at our expected costs as well talked with other families that have had this procedure and this figure seems to be the average. 

I hope this answers some the questions you may have. I have been working on a post regarding fundraising, what we have been doing and what you can do to help, hopefully it will be up soon!! 

I am also wanting to post about the Microtai/Atresia Conference, more about the actual surgery as well as how living with Microtia effects Aaliyah's day to day life. 

Also, in case you missed the link on Aaliyah's Facebook page, 96five have run Aaliyah's story on their radio station. There was some technical difficulties with the podcast but hopefully it should be up soon. I will post photos on her facebook page tomorrow when we go and meet the radio crew!

Saturday, 20 July 2013

There is so much I want to write about, to tell you all. 

About our wonderful support system, those that comfort me when I am ready to give up, our family and friends that have been their through it all. I want to tell you about the bitter sadness and disappointment we have felt when we have had our applications and pleas for funding knocked back and people that have said they would be there for us, seem to disappear when we have needed them the most. 

I want to tell you about have parenting a child with a hearing impairment has changed me, for the better. How hard, how rewarding it is. 

I want to tell you about how lost I feel about fundraising and yet so determined and blown away by the support and generosity of people near and far. 

I want to share with you how I feel about being a working mum and how hard I find it. I feel like it it makes me a second rate mum. Mostly due to tiredness, shift work really takes its toll on me. And nursing is not only physically draining but mentally and emotionally draining as well. 

I want to tell you that despite all the ups and downs, Aaliyah is thriving. She is busy, oh so busy, being three is very hard work you know!!!! Her and her sister fight like crazy but are the best of friends. 

I want to share with you more about Hadassah, our cheeky little monkey that has healed so many old wounds. 

I want to tell you how grateful I am for all of the love and support we have felt over the years. 

I want to share our next fundraising adventures with you, as well as recap some of our old. 

I want to tell you more about Microtia, and the amazing surgeons that are going to change our little girls life. 

But life has been busy. I have been tired. Overwhelmed. Feeling defeated. 

I do not go on the computer at all during the day, my priority lies with my girls.They do not attend daycare, so unless I am at work they are with me. And thats the way I like it. But it doesnt leave me much time to work on her fundraising during the day, Im flat out getting the housework done.  And the evenings seem to fly by, between working some evenings (or overnight), general clean up and folding the never ending baskets of laundry, I am left exhausted.

I need to get back to writing to the media/sports clubs/anyone that might help. I need to get back to blogging and spending time searching for more fundraising options and opportunities. No more excuses. Aaliyahs Journey is back. With a renewed determination. 

So watch this space. Big things are coming. I just know it x 

Tuesday, 7 May 2013

Trivia Night Recap

Our night started of like a comedy of errors. We had 2 hours of set up time from when we had access to the hall until we were expecting our guests to arrive. We thought this would be plenty of time as this was the amount of time we had the last time and had spent the 30 minutes in the lead up sitting twiddling our thumbs. Alas it was not to be. Bringing the carloads of things needed took longer than expected, three of our helpers were sick and we also had a 3 year old and 21 month old running around!!!!!! 

Needless to say it was most definitely a last minute scramble to get things organised. But we did it. People started arriving, and it was then that we found out that all of the pens I had brought with me didnt work. So we had people registering with a colouring in pencil. I can giggle about it now, but on the night I was STRESSED to the eyeballs. Thankfully we had some wonderful people step up and help us out, and even though things didnt go quite to plan, the evening went quite well. 

It was so nice and so very humbling to meet some of the people that support our Aaliyah. People that we do not personally know but just felt compelled to help. We continue to be blown away by this. One lovely lady (Marguerite) had her church group fundraising for Aaliyah for the last year and handed over a cheque for $700!!!! Another came with a donation of 10 pass boot camp (thanks Dale and Ripple fitness). 

It was equally amazing to have some of our dear friends there. The ones that have been there for all our fundraisers. Always supporting us. We have been incredibly blessed by our wonderful friends. The age and stage that we are at at the moment means that most of our friends are either newly weds or have young families. We understand the sacrifices that some had to make to be able to be there to support us. 

We had over 110 trivia players. It was an amazing site, all there to support our Aaliyah. Just over $6500 was raised. An incredible amount. 

I asked people if they had a good time and they all seemed to, with many asking when the next trivia night will be, so that is always a good thing. The meat tray and fruit trays proved to be popular raffles. And a lot of laughter was heard throughout the evening. 

Thank you, to you all. Those that donated to the prizes/auction items/raffles. Those that bought tickets and attended the trivia. Those that put in hours baking and preparing for the night. And those that stayed behind to help clean up. 

Thank you to Simone for coming and sharing Chelsea's story. You are such an inspiration to me and I cannot put into words how much it meant to have you there to support us. 

We got home after midnight with two very overtired little girls and grateful heart. The end of our evening was even a comedy of errors, with both girls screaming the whole way home, and then poor Aaliyah wet her pants so we were taking out car seats and cleaning them at 1am!!!!! Life has a way of keeping us humble!

(Im sorry this post is a little later than I would have liked and a little all over the place, but Aaliyah has been battling asthma again (thanks to the cold change) and her sister Dass has a chest and throat infection, and I have been getting 2-3 hours sleep as a result, that and I have spent the last two evenings scrubbing my house as the newspaper photographer is coming tomorrow and its bringing out the perfectionist in me!!)

Tuesday, 9 April 2013

A Letter

Dear Aaliyah,

One day you will be old enough to read this blog. You may read some things that confuse you, upset you or uplift you. Know this baby girl. Are are and always have been loved. 

From the moment we found out we were expecting you, you had our hearts. You were a fighter from the start. Even your rough start to life has not slowed you down one bit. 

My darling girl, you are so strong, so brave and I am so so proud to be called your Mama. Your smile is infectious and you know how to work a crowd. You are strong willed, something that can make me very tired some days but I know this will serve you well as you go into your teenage years and beyond. 

You love anything girly - princesses, dancing, dress ups, dolls and barbies. I wonder if this will continue? 

Your eyes take in everything around you. You do not miss a beat. Always questioning, always wondering. It is so much fun seeing the world through your eyes. 

At 18 months old, you became a big sister. You handled this transition so much better than I ever thought you would. You love Hadassah so much and your bond is incredible. I pray this continues. Remember, you may have your disagreements, but as sisters you will always love each other. 

Aaliyah, the girl that made me a mama. You have fundamentally changed me. For the better. You have changed all of us. Mama, Daddy, Nene, Pip, Nana, Nono and all of your Aunties and Uncles. You are so so loved by so many. 

All the tears, the highs and lows, have all been worth it dear girl. You have the ability to make me smile when everything seems to much. Your honesty keeps me in check and makes me strive to be a better Mama. 

Aaliyah, I pray that as you grow, you will remember these words. Remember the love we have for you. Remember how strong you are. 

I love Aaliyah, always have and always will. 

Love Mama 

Friday, 5 April 2013


Hi all.

Writing that post last night proved to be very good therapy for me and indeed has given me a fresh perspective.

How lucky are the children that are able to get their surgery. How hard must their parents have worked to get them there? We are not the only ones that have had to struggle through the highs and lows of fundraising. Indeed, I am yet to meet one family yet that hasnt had to do some form of fundraising. What amazing parents they are!!!

I have no right to be jealous. Instead I should look up to these wonderful parents that are willing to go above and beyond for their children. What an inspiration!!!!

So thank you for being patient with me and very forgiving when needed. Your support means so much. xx

Thursday, 4 April 2013

Attack of the green eyed monster

Envy - feeling of discontent or covetousness with regard to another's advantages, success or possessions

Yup. Pretty much sums up how I have felt the last few days. Seeing other kids getting their surgeries done or have their surgery booked whilst we are still no where near that point has caused a major attack of the green eyed monster. 

It's a terrible feeling and one that I wish I didn't feel. I could pretend that I dont, but that wouldnt be honest. It really is something I am struggling with right now. 

Microtia kids are a rare breed and us parents need to stick together, so harboring feelings of resentment really does the situation no good. 

Aaliyah is nearly 15 kgs, the weight she needs to be for the surgery. Therefore, the ONLY thing that is holding us back is finances. I HATE IT. I hate the whole situation - not having the money, having to ask others for money, having to fill out requests for donations only to be knocked back. 

Before we had Aaliyah, we had our house deposit saved. That reserve is now gone. Between Jose going back to study and Aaliyah's unexpected medical bills we chewed through that faster than one would like. I am forever grateful that we had that reserve, who knows where we would be if we didn't. 

We are not in a position to borrow money. And that is fine, it really is. We would hate to be in debt. 

There are so many factors that we cannot control and many things we lack but here are a few things we can control and things that we have in our favour. 

1. Our Attitudes . How grateful we are for the support we have been given. For the love shown to us and to our girls. For the fact that despite her Microtia, Aaliyah is an otherwise healthy 3 year old girl. We have her here with us, a privilege denied to so many parents. 

2. Our Time. I have the ability to work shift work. How grateful I am that I have a job that I can work around family life. Aaliyah and her sister are (for the most part) wonderful sleepers, sleeping 12-13 hours every night. This gives me plenty of time in the evenings to prepare documents, write to organisations and try and source new ways of fundraising. I have to be honest and say that wise use of time has not always been a strength of mine and something that I struggle with. I am slowly learning how to use it more wisely and am setting weekly goals I want to achieve in regards to the administration side of things. 

3. We have support. Arghh. I am planning on writing a post about this. Our support network is nothing short of incredible. What we lack in money we make up for in support. Family, friends, online, Hear and Say - We have been so blessed to be surrounded by so many wonderful people. I need to make sure I am doing my best to honour them. 

4. Determination. We have determination. As soon as we realised that this surgery was going to be the best option for Aaliyah not once did we let the price tag put us of, instead adopting an attitude of "we will do it". So many times as parents we say "I would do anything for my child". Well, this is our "anything". 

In a way it is a blessing that others are going before us. We can learn from them. Where to stay, what attractions are worth seeing. Best mode of transport. How their child went post op. 

I hope this green eyed monster buggers off soon, I have had enough. 

Friday, 29 March 2013


Thank you all for the kind thoughts and well wishes with Aaliyah's CT. Everything went well and she coped with fasting better than I expected. I guess as parents we struggle more than they do, she was just going along for the ride. Happy to have rare one on one time with Mama and free use of Nana's iPad!!!!

So someone asked on FB how I am doing?

The truth be told I fail daily. This parenting gig is hard. They tell you all kinds of things when you are pregnant. You know, that you will be tired, that you will feel like pulling your hair out. And you smile and nod and go, not me, not my child.

I now smile at the pregnant mamas at the shops, or the ones with newborns. The ones that look at me in disgust when Aaliyah is screeching at the top of her lungs because she wants to look at the barbies NOOOOOWWWWWW, and her sister is busy throwing everything I put into the trolley out. I know their turn will come, until then I will let them remain in their bubble!

Towards the end of last year I teetered dangerously close to a break down. I am not afraid to say it. I think it is very therapeutic in fact to be able to talk about these things. Yes, I do realise that this is Aaliyah's Journey blog and not Amy's Journey blog, but you will understand why I am saying these things in a minute.

You see, I had spread myself too thin. Wife, Mother, Advocate, Student, Bread Winner, Chief Homemaker and Housekeeper, Fundraiser. Fortunately I was able to have 6 weeks annual leave (from work, not life!!), Uni finished for the semester (and I made the decision to not re-enrol, my sanity is more important than my degree) and for the most part of those six weeks I only did the very basics of housekeeping. We did a whole lot of nothing, just what I needed.

Unfortunately this came on the back of one of our biggest fundraisers to date, our trivia night. So whilst I dutifully wrote out the thank you cards, they were never sent. And I haven't done much fundraising since. Nearly six whole months has passed with not alot happening.

The guilt I feel is incredible. Its weighing me down. Aaliyah's surgery will not pay for itself. Those kind people that have donated goods, services or money deserve a proper thank you. Gratitude means so much in this harsh world. I have let others down.

So, Im turning a new leaf. A new season. Back to fundraising, back to actually sending out the thank you's I write. Back to being the Mama my girls so desperately deserve. Back to treating myself and my body the way it deserves.

Plans are in motion people. I will get there, we will get there.


For loving our girl enough to give up your time, money and goods to help support her, even when her mother has been slack. I do not deserve it, but she sure does.

I have now turned my attention to organising our next trivia night, letters to local clubs and trying to source donations from major corporations.

(side note: our plan is for Aaliyah to have her surgery next northern summer, so June/July 2014, we have a long way to go with fundraising, but be sure, we will get there... I am back and more determined than ever).

Monday, 25 March 2013


I remember when I was 21, studying my nursing course, I bought a "Hear and Say" butterfly as a part of their Butterfly appeal. I remember, "Thank Goodness I will never have a child with hearing loss, those poor parents and children"

Oh the IGNORANCE!!!!!!

As a silly, naive 20 something, I thought that those type of things only happen to other people. I don't really know what made me think I was so special that it wouldn't happen to me or my family. I still have that butterfly. I am so glad I kept it. It reminds of who I was, and who I want to be.

I have come to a place in this journey of Acceptance. You know the stages of grief. Denial. Anger. Bargaining. Depression. Acceptance.

The road to acceptance hasnt been easy. But I guess that's the way it was always going to be.

Those first few days in the hospital. A time when we should have been celebrating the birth of our first born. The first grandchild on both sides. Instead we worried. We were told all kinds of horrible details and no actual details on her actual condition.

Jose and I came to the conclusion that if we worked on her ear it would open up. Denial. We thought of all kinds of ways in which we could improve her ear. We seriously thought the doctors were crazy when they said she had no canal. Its actually laughable now, but at the time it was very raw and very very much real.

Oh. Anger. That was not a nice place to visit. Anger at God, at myself, the universe and even at poor little Aaliyah. Yes, I said it. I was angry at her. Why could she not have been born perfect like all my friends babies. Anger and I had quite a lengthy visit. My poor husband. My poor daughter. My poor family. I was not particularly nice to be around. Thankfully Aaliyah was too young to realise, and I have a very loving and forgiving husband and family.

This is a funny little stage to be at. Especially when coming out of the anger phase. I almost had myself convinced that I had accepted everything. Looking back I realise that alot of my conversations started with "well maybe if we do this, then...." Good one Amy. You cant bargain with life silly girl. Funnily enough I didnt bargain for long, the old black dog, Depression was eagerly waiting for me.


I think I stayed here longer than all the other stages combined. The culmination of all my grief. The overwhelming sadness that consumed me. Sadness for what I thought it was going to be like. Sadness for what I "missed out on". Big, heart wrenching sobs. A melancholy so hard to describe. I had to stay there. I needed that time. To work through things, to process, to understand, to accept.

I mourned the loss of the child I expected. The delivery I felt I deserved. For what I thought she would miss out on.

Please understand me when I say these things that it in no way, shape or form reflects on my love for Aaliyah, only my personal struggles. Aaliyah held my heart from the first time I saw her beating heart on the ultrasound (probably even before then).

This was just a process to get me to where I am today and that is:


What a freeing place acceptance is. I am so glad it is the last stop on the grief train. I actually like it here. And do you want to know something crazy? I am grateful for Aaliyah's Microtia. She has taught me so much. To look for abilities not disabilities. I now know what it feels like to be "on the other side". And I quite like it there, thank you very much.

Over the past few years, I have had the honour and privilege of knowing some of the most inspiring people. I have learnt who my true friends are. You know, the ones that stick around when the going gets tough.

I am so grateful for this whole experience. It has fundamentally changed me as a person. But how could it not. In some ways I wouldnt change a thing.

Yes, I wish with my whole heart that Aaliyah had been born with 2 hearing ears. But if she had, then we would have missed out on so much - friendships, experiences.

So that is where I am at. Grateful for our journey. For our Microtia community. For our family. For our faith. For so so much.

Acceptance, I like you alot.


Thursday, 28 February 2013

Hadassah - the girl that healed my heart

*I want to preface this post by stating that JUST BECAUSE Hadassah healed some old wounds from my pregnancy/delivery/first few months with Aaliyah, does not in any way, shape or form have any reflection on my feelings towards Aaliyah. I love that girl with all my heart and soul*

(38 weeks with Aaliyah)
Everything about my pregnancy/labour and delivery with Aaliyah  and the first few months we so far removed from what I had planned in my mind. Granted, nothing in life goes to plan, but mine was so far removed it now seems almost ridiculous. 

(First proper cuddle in special care)
I have previously written a whole post dedicated to my pregnancy with Aaliyah as well as her very traumatic birth. Needless to say I was a little (ok ALOT) cautious when it came to my pregnancy with Hadassah. I spent the first half of my pregnancy begging the Obstetrician to allow me to have a caesarean section. Needless to say that didnt happen.  

(Aaliyah in Special Care, soon after she was born)
I never realised just how healing Hadassah has been until more recently. I didnt realise the resentment, guilt and anger I carried either. She really is the girl that healed my heart. 
(Pregnant with Hadassah)

With Hadassah I got "the glow". You know, the one people talk about that happens when you are pregnant? With Aaliyah I looked like I had been starved for the last year. My pregnancy with Hadassah was much more normal. Besides a little preterm labour incident, her pregnancy was relatively drama free. 
(Aaliyah and I at my baby shower for Hadassah)

I will never ever forget holding her in my arms for the first time. I kept saying over and over and over " I just had a baby". I kept waiting for the bad news to start. Waiting for them to take her away from me. Waiting for me to pass out, waiting waiting waiting. Nothing. 
(moments after Hadassah was born)
Hadassah stayed on my chest for a good hour before they even weighed her. I was completely blissed out and almost forgot that I had had her all natural, not even gas (something that I NEVER thought I would ever do, I hate pain and always planned to have an epidural with every delivery). 

I remember walking up to the ward with her, thinking "oh my goodness, so THIS is what it feels like". To be normal. To have a baby stay with you. To have a baby that doesnt have some form of abnormality. To be left to bond with my baby. 

They did a hearing test on her, but I refused to photograph it. My thoughts at the time was that Aaliyah didnt get the chance so I dont want any evidence that Dass did (yes, I regret it). 

I remember being discharged home a few days later, with little more than "make sure you follow up with your GP in six weeks, good luck". It was AMAZING. 

The bond that took me a good six months with Aaliyah was almost instant with Dass. I guess it really does prove that how things start out can really dictate how well the mother bonds with the baby. (I want to say right now that just because I didnt BOND with Aaliyah straight away, doesnt mean I didnt LOVE her with all my heart, we just had so much going on with Lia that the bonding took a little longer). 

And home we went, just the four of us. No appointments, no fear. I was relatively well, and was able to just "get on with it". 
Healing. From the hurt I never realised I carried. From the pregnancy and delivery that rocked me to my core. I have tears in my eyes just thinking about Aaliyah's birth story and first few months. They will always be a part of her story, of who she is. And I have finally come to a place of acceptance. That even though it was traumatic. Even though her Microtia was unexpected. It was beautiful. It gave us her, the girl that made me a mama, the girl that made us a family. 

Healing. It can come in many shapes and sizes. It can take a long time, or just a little. For me, it came in a 3kg bundle of love named Hadassah. 

Aaliyah made me a mama, showed me that there can be beauty in the unexpected. That even though we may not be on the path we intended, the scenery can be just as beautiful if you happen upon a different way. 

Hadassah, the girl that healed my heart. That showed me that even after the darkest of storms, there will be a rainbow. That looked up at me with the darkest of all eyes that seemed to say, everything will be alright. And it is. 

Healing. To be made whole. 

And these two girls are my whole world.

Sunday, 17 February 2013

This Week

we have been: 

playing with friends

Enjoying Playgroup, Ballet and Music,
Went to the Library

Learning through play 
(any one want to buy me a dishwasher??)

 Enjoying visits for our family 
And then recovering from Colds and Asthma....

Sorry I haven't posted about Aaliyah and Hadassah's relationship, but we have been busy - playing, visiting, exploring, learning and dancing. 


Tuesday, 29 January 2013


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

Wednesday, 23 January 2013


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.

Monday, 21 January 2013

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!!!