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!!!

happenings

Happenings:

Just wanted to say a quick hello and let you all know that this little blog of ours is still chugging along. Life seems to have a habit of getting away from me and before I know it, it has been 2 months since an update!!

We are holding a big trivia night next saturday, which we are looking forward to. It is sold out!!!

Thank you to all that continue to faithfully follow us on our journey. Will write a proper update a little later on x

A mishmash of happenings

Hello, is anybody there??

I have to ask because I rarely write a post!!!!!

Life lately has gone on, full speed ahead. No rest in this household.

• Aaliyah got a good report from her Auditory/Verbal Therapist. At 2 years 7 months she was talking and comprehending at a 3 years 8 months. To say we are proud is an understatement.
• This winter has been hard, Aaliyah has had 3 admissions and 4 trips to ED, all for her asthma. It has been hard keeping this energetic toddler inside most days, I am so grateful that spring is finally here. We are already spending more time outdoors much to the delight of Aaliyah and Dass.
• Her ENT confirmed that Aaliyah will continue to be frightened of sudden noises due to her inability to know which direction the sound is coming from. 
• The annual microtia/atresia conference is happening in 2 weeks and we are excited to attend, learn more and spend time with other families with children just like our Lia. 
• My Aunty Raewyn (in New Zealand) hosted a fundraising dinner for Aaliyah raising $3000! Thank you so much x

I have so much I want to write, want to say, but I have just finished writing a research paper and im still recovering from a virus so I am feeling a little uninspired at this time. Will hopefully write more in the coming days. 

Its been a while. Too long in fact. I havnt kept up with the blog and I wasnt too worried as I thought that our families were the only ones to read it. But having had several people comment that they have missed our blog has encouraged me to update.

We have had a crazy crazy crazy few weeks in our household. In order to keep this brief I will write down the last 6 weeks or so's activities, in no particular order:

• Aaliyah has had not one but TWO admissions to hospital for her asthma. Its winter, so as soon as the cold comes so does the asthma. We try not to go out before 9am and are always inside by 3:30/4pm at the latest. I hate having to restrict our activities but I hate watching her struggle to breath more
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• We moved house!!!! HOORAY!!!! Both the girls are so much happier, we have so much more space and a huge patio and backyard. Its an easy 5 minute stroll to the park and only a 2 minute walk to my parents house. We are saving so much on petrol as we are closer to work/uni/shops/music/playgroup etc. 

• The week of moving house we all came down with a nasty gastro bug. It was horrible, one by one we got sick. It took nearly 2 weeks for everyone to get better. The bug started 6 hours after Aaliyah's first hospital admission. 

• We then all got tonsillitis, well 3 of us, Aaliyah was spared, but Jose, Hadassah and myself were all miserable, thankfully we recovered quickly once the antibiotics kicked in.
• Exam time is upon us and Jose and I are busy trying to play catch up with our classes. Never a dull moment in our house, we both work, we both study and neither girl goes to daycare!!!!! Its the ultimate juggling act!!!!!

• We have started going to a Mainly Music class on a friday morning and both the girls seem to really love it. Its so good for their learning and socialization. 
• Aaliyah's hearing aid keeps on playing up. We have our name on a list to try a different hearing aid, a BAHA on a softband. Hopefully this will happen in the next few weeks and we will have it on loan for 3 months. All the feedback we have heard about this hearing aid has been very positive. 
• We continue to notice that Aaliyah's behavior is much worse if she does not have her hearing aid on. She is booked for another hearing test in July, I am interested to see how good her hearing is in her "good" ear.

• Brisbane artist Tracey Kellar has donated a wonderful print for us to raffle. The raffle is continuing until the end of June and it seems to be going well. We are continually humbled by complete strangers being willing to help. 
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• The butchers at Meat @ Metropol continue to be amazing supporters. They will be working closely with us as we continue to work out details for our big dinner/auction. We cannot thank them enough.

• Aaliyah and Hadassah are flower girls for Jose's sisters wedding  on June 16. Jose is a groomsman and I am a bridesmaid, it will be an amazing day and we are looking forward to watching Jocelyn and Andrew become husband and wife. We have been busy in the last few weeks doing last minute bridesmaid/groomsman duties :)

• We have also recently found out that Hadassah is lactose sensitive, since putting her on a lactose free formula (she self weaned at 9 months) she has been a new baby and has finally started sleeping at night. 

• Aaliyah has another auditory/verbal therapy review on June 20, I am looking forward to seeing how she is progressing and if their are any areas we should be concentrating on. 

Thats all for now, be back in a few days detailing more fundraising updates etc.. xx

The club

Aaliyah celebrating her second birthday a our playgroup

After Aaliyah was born, we had a lot of support services offered to us. One was a hearing loss support officer/social worker. Her name was Isabel and she was wonderful. She told us about the Hear and Say Centre. She mentioned that they had a play group so when Aaliyah was around 6 weeks old, we went to have a look.

I don't know what it was but I looked around playgroup and felt " I dont belong here". Denial, it was. I still held hopes that Aaliyah would have some hearing in that ear and that it was all a really bad dream. Even though the play group was well run, in a centre that could double as a proper kindergarten, we didnt go back.

A year goes past in a daze of little sleep and a lot of doctors appointments. I realized I needed to find more structured activities for Aaliyah.

So I sought out a playgroup. What better way to meet other mothers as well as give Aaliyah the socialisation that she needs.

So, I called up Playgroup Australia, gave them my preferred day and the list of locations and before I knew it, we were at our first playgroup.

I cant say it was a horrible experience. But it certaintly wasnt the best. All the mums were at least 5-10 years older than me, making me feel like a child bringing a child. They were all full time stay at home mums, with cleaners, and tennis club on thursdays. I was a 25 year old working mum, no paid help and the only thing we ever had on Thursdays were doctors appointments. Dont get me wrong, they were nice enough, it just wasnt for us.

And then I remember The Hear and Say Center. We went one Tuesday, and then the next and then the next. We belonged. This was our club. Our place.

Our playgroup at The Hear and Say Center is AMAZING. I wish I could put into words just how much this little group means to me but I cant. So I will tell you a little bit about it.

The playgroup is staffed by 2 fully trained Auditory/Verbal therapist that work for the center. On top of that there a several volunteers that help out week in week out. The room is set up like a pre-school. There is a home corner, Blocks, Craft stations, Playdough, Reading corner and even itty bitty toilets. And there is an outdoor area set up with Painting, a sandpit, trikes and other outdoor toys.

Free play, followed by morning tea (fruit), the a story read using the help of a FM system (amplifies the sound for the hearing impaired), then music time. Aaliyah loves it, its her favourite day of the week.

But that is not why I love it, REALLY love it. I love it because of who I have met. The people. We all share one thing in common. We all have a hearing impaired child. Their is a comraderie about us. From Cochlear Implants, to hearing aids to microtia, we all share one thing in common. We come from all walks of life, some work, some stay home, some younger, some older, some with one child, some with 4. But we are all linked. We understand.

Whilst I would have never chosen this journey, it was chosen for us. And I am glad.

The Club. And I am a proud member.

PS: this month is the Hear and Says "Butterfly Appeal" month. Please head on over to their website for more details on how to help this wonderful organisation

www.hearandsaycentre.com.au

PPS: Aaliyah is the poster child for this years microtia/atresia conference!!!!!