Just a quick update to let you all know that we are still here..

Aaliyah has an appointment with another plastic surgeon tomorrow. Not holding out high hopes for anything new but will be good to get another opinion.

We hope you all had a very merry christmas, and have welcomed this new year with open arms.

Will post more tomorrow night after we have seen the new doctor.

We have big plans for 2012, looking forward to sharing them with you all in the coming days/weeks/months!!

Aaliyah's Birthday

With Aaliyahs birthday approaching, I find myself going back to the day of her birth, and the days that shortly followed.

Most people look back at the birth of their children and smile, that even through the pain they were handed this precious little bundle to love. I dont. I look back and remember the anxiety, the pain, the uncertainty. It was nothing short of horrific.

I will never forget the look on my mums face when she was born, a look of sheer horror. The room went from being calm to a frenzy of what seemed like a million people.
I remember asking if Aaliyah was ok, when no one else replied, my mum said "of course she is sweetheart". What i didnt know at the time was that mum really had no idea if she was fine or not, she just didnt have the courage to tell her daughter that the child she had just laboured 50 plus hours for was dead. ?they eventually got a whimper out of her and she was whisked away to NICU, leaving me to be pieced back together. It took them over 3 hours. They wheeled me to see her but I was too sick and passed out. It was another 24 hours before I would see my baby.

My recovery was horrible. Months of doctors visits, physios and even another hospital stay. But nothing can compare to my emotional recovery.

When Jose discovered her little ear, they quickly pointed out that there could be many other defects too. Kidney failure and Heart Problems were the first to be mentioned. We were devastated. I felt like a failure.

The first few months of Aaliyah's life were spent going in and out of hospital. We were told that she would have kidney problems, heart problems, eye sight issues, growth issues and could be retarded.

She would need therapy, hearing aids and on and on and on it went.

Our hearts ached. Jose was in denial, I just about had a melt down.

Its interesting looking back now, seeing how far she has come, indeed how far we all have come. She has defied the doctors. Through all the tests, everything came back perfect. No kidney issues, no heart issues and certaintly not mental retardation. She has excelled in so many ways. She is a fighter our little Aaliyah is. Her speech and language test at least a year above what she should be. She is a social butterfly. The cheekiest little muffin that their ever was.

I look back at her birthday with mixed emotions, heartbreak for what might have been and absolute pride. She has proved them all wrong, from the child that was born with out a heart beat, to a little girl full of life. She makes all those around her smile.

In some ways I am glad that this is the path we have to walk. My faith in humanity and the spirit of kindness has been restored. Its been downright hard, but it has made us who we are today. It has made Aaliyah who she is today. We are stronger, she is stronger. I couldnt imagine her any other way. A bright, bubbly bundle of energy with killer curls. My heart aches with love for her.


I would go through it all again in a heartbeat if I had to, because our little Aaliyah, well she makes it all worth while.

Happy birthday for Wednesday little princess, Mummy and Daddy love you to the moon and back. xxxxx

It has been nearly 2 years since that bittersweet day.

Market stall

New banner, with slogan!!! Thanks Jose

Clips at our little stall

Part of our stall

Aaliyah at the Hear and Say play group

We had a very successful market stall on sunday, raising nearly $900 with a few more payments still pending (which should bring our total to around the $1000 mark).

There are a few people that I would like to publicly thank for their help, in no particular order:

Jose - designing our banner and business cards

Janine - for your sewing skill and your dedication

Pip - for printing out our tags, and allowing us to take over your house in our market prep frenzy

Sandra - for watching miss Aaliyah for a few days so that I could focus on preparing

Bec- chief babysitter of miss H on the day

Jess- for making clips, spreading the word and helping man the stall on the day

Heidi and Petter - without your support, and spruking of our stall it would not have been a success (Petter was also the lucky winner of our raffle), and heidi for your clip making skills

Nicola - thanks for helping with the decorations, the stall and for clip making

Hilary - For helping assemble our tags, Hilary is currently raising money for canteen by doing the kokoda trail next april, support her by visiting her site www.everydayheroes.com/hiking4heroes

Diana Hurman and Diane - Thank you for your wonderful sewing skill and contributing SOOOOO much to our stand

Alicia - for selling chocolates for us at your lolly stand

Merlo Coffee for the wonderful hamper that you donated that we were then able to raffle!!!

Im sure that there are a billion more people that I need to thank but that list will have to do for now.

We have also gotten business cards printed, if you would like one (or 10) email me at amyjperdomo@hotmail.com, your address so that I can send you some!

We are so excited at how thing are going and looking forward to an even bigger and more successful 2012.

Now onto a completely different note. Aaliyah attended the Hear and Say playgroup break up. The media were there, so chances are her photo will pop up somewhere. RACQ care flight donated Christmas teddy bears for all of the children as well as a book. A lot of the supporters of the Hear and Say centre were there so it was a very big and busy day. If you are a fan of the hear and say facebook page, you will notice that Aaliyahs photo is featured. Aaliyah was a bit overwhelmed that day as it was very busy and there was a lot of noise, something that children with hearing impairment struggle with.

We are noticing more and more Aaliyah's struggle with directional hearing, further cementing that we have made the decision to correct her hearing loss by going to America to get the atresia repair.

Aaliyah has also had trouble keeping her sunglasses on, she gets very frustrated that they do not stay on straight. We cannot wait until she has her new ear and she can wear her sunnies with no issue.

I cant believe all the support that Aaliyah is getting, it is truly nothing short of a miracle.

Today, my mothers butcher gave her $50 towards Aaliyahs operation. She has been going to the same butcher for years and always orders the same. She got talking to him about Aaliyah and he went out back and came back with the money.

Another person paid $105 for $8 worth of chocolates. BLESSED!!!

We are busy preparing for our market stall on December 4. Hillsong Church is having their Christmas Spectacular and are having a market area (as well as rides, entertainment etc) and through some connections (thanks Petter and Heidi ) we are now able to have a stall. We will be selling bunting, table runners, swing top/bloomer sets, hair clips, aprons (childrens and adults, including some parent/child sets). We will also be selling chocolates and have a donation jar set up. We are getting business cards made up with her details (including bank account) to hand out. So if you are in the brisbane Area, pop by and say Hi :) we would love to meet some of her supporters.

microtia conference, fundraising and more....

gosh i am slack with the blog post. My aim is to do 2 per week.... I will get there :)

The first weekend in October Jose, myself and my mum went along to the third annual Microtia/Atresia conference. We are so fortunate that this conference is held in our city. Parents came from all over Australia and New Zealand to attend. The conference was held on the saturday and on the sunday we had the option of having individual consultations with the presenting professionals. Morning Tea, Lunch and Afternoon tea were provided and it was only $35 pp. A blessing, particularly for those that had to travel from interstate. We sat behind a family that had traveled down from Townsville, with their one week old baby in tow, now that folks, is dedication.

We are sooooooo glad that we were able to attend. It reinforced to us that we really are doing what we feel is the best for Aaliyah. Notice I didnt say what was best, just what is best for Aaliyah. I was disappointed in the Australian doctors that spoke. They are quite behind as far as best practice. They offer a similar (ish) surgery to the doctors in the USA but will not operate until the child is old enough to ask for the surgery, very poor results and they do not believe that hearing aids make a difference.

We were so impressed with Dr. Reinisch and Dr. Roberson. All is looking good for Aaliyah to get her surgery with them mid 2013. We just need to make sure that she weighs 15kgs!!!!! I cannot wait for her to have a normal ear and more importantly near normal - normal hearing!

Aaliyah continues to startle easy to noises without her hearing aid on. Now that she has her hearing aid back, her lisp is slowly improving, something we are very grateful for. Her behavior has also markedly improved. It truly is amazing the difference it makes. I am worried for summer being around the corner as the headband is quite thick and is quite hot for her to wear.

Fundraising is going well. We are still selling the cadbury fundraiser chocolates. I am about to add bunting that is for sale onto her facebook page. We are planning on going to the local Childrens markets in december to sell bunting, hair clips, christmas clothes etc to raise some more money. I am also in the process of organising the next online auction.

On another note, Aaliyah's Journey will *hopefully* soon be a registered charity, thus making it easier for those wanting to make tax deductable donations.

Long overdue update

Miss Aaliyah LOVES her little sister so much

Here is a better picture of little miss H :) she is one lucky girl to have such a spunky big sister

Isnt she a dag!!!

Pretty in pink, love this cheeky muffin :)

IJust wanted to start of by saying a massive thank you to all those that donated and participated in Aaliyahs online auction, it raised nearly$450!!!!!

I apologize for not posting very regularly, we have been very busy. Between looking after the girls, going to appointments etc my days fill up fast. We also only have one computer, as Jose is studying, if he needs it for assignments etc, he has priority. I could post/ update from my phone during the day but I like to focus on giving the girls my attention, they are only small for such a short time, I just want to soak it up and enjoy being with them!

This post, like so many of mine is going to be a bit random (and long!!)

Firstly, Fundraising:

I cant believe how many people are willing to help our little girl, we are so blessed. The online auction went so well and we already have several people wanting to donate to another auction, so we are planning on another auction, to start end of October. Those that have offered to donate, I will contact you shortly. I think October is a good time for an online auction as people are starting to think about christmas presents but their budget has not been blown yet!!!

If you are thinking about donating to our next auction, please email me: amyjperdomo@hotmail.com

Our chocolate drive is going well, it has raised $800 so far, I am ordering another 20 boxes to be delivered Wednesday. I think we will keep going with the chocolate fundraiser until it gets too hot and then we will have a bit of a break over the summer.

We are hoping to do a few bunnings BBQs over the summer, we have heard that they are good fundraisers, averaging around $1000!!!

My mother in law, Sandra, has been doing some fantastic fundraising at her work. She works for bernafon, which manufacture and distribute hearing aids!!! Interestingly enough, Aaliyahs first hearing aid was a bernafon one! Her work has gotten behind Aaliyah's journey. They have been donating money, buying the fundraising chocolates, held bake sales and are now doing a raffle.... I am continuously amazed at the amount of people that want to help our little princess, we are truely humbled!!! Sandra dotes on Aaliyah and this is obvious to those she works with, so they are all very keen on helping in any way possible.

We also have printed flyers explaining what we are doing, we have been handing them out to those selling chocolates as well as businesses etc.

We also have family and friends contacting radio stations, television networks and magazines :)

We also have family in Australia and New Zealand, doing their own fundraising etc. Arent we blessed :)

A trivia night/auction dinner is also in the pipeline, if you or anyone you know would like to donate to that please contact my sister Jessica Waterhouse: jess_waterhouse@hotmail.com as she is organising it!!

Aaliyah:

She is doing exceptionally well. She recently had her six monthly auditory/verbal therapy review. She tested above her age group. At 20 months her speech is at a 2.5 - 3 year old level and her comprehension/ability to follow instruction is at a 2-2.5yr old level!!! I was blown away!! I knew that she talks well but I didnt think it was THAT well! I was also surprised at how well she followed her teachers intructions. She certainly doesnt follow my intstructions that well :)

As she is approaching 2, we are facing the usual "terrible twos" issues. She is great most of the time but she has a very very cheeky side to her. I think that she is just too nosey for her own good. She gets into EVERYTHING, but I think this is just her curious spirit. She is saying the cutest things and is the greatest big sister. She panics if she cant see her and loves to give her toys to play with. Im sure this wont last much longer, so I am just enjoying it whilst I can. Aaliyah is a very girly girl. Always has to have a fairy skirt and wings on! she struggles with her "w's" so will say: " I mant my mings " aka: "i want my wings"... she is just too dang cute.

We go to the hear and say playgroup on a tuesday morning. The Hear and Say centre is a centre for deaf children and their families. It is where she goes for her speech and langauge reviews. At playgroup there are 3 other children with Microtia. I know that at least one other is fundraising for the operation. It saddens me that our government doesnt support overseas medical treatment as well as it could. The treatment for microtia is deemed as optional and not essential, therefore the government doesnt help.

A few people have suggested to us that we just "put the operation costs on our mortgage or get a loan". Well firstly, we don't own our house, in fact we rent a very modest townhouse in a very average suburb (in an effort to save more money for Aaliyah). Before Aaliyah was born we were thinking about buying a house, but our plans have changed :) and thats all good, she is worth way more than a house ever would be to us!!! IF we get to the age that Aaliyah can have the operation and we still need a little more money, we will take out a loan if we have to, we would just prefer not to.

Another question people ask is what are WE doing to help make her operation possible. We have a direct debit into her account every fortnight, with additional contributions as we can. I am also doing all of the work towards raising funds :) It is hard work, it is a very humbling experience. I have had to swallow my pride and stick my hand up and say "please help". I HATE having to ask people for help. In an ideal world, money would be no object and we would just need to book the operation in. I met a lady last year that had a son with microtia. Within six weeks he had his operation because they had the money. Unfortunatly we are not in that situation. But I will not complain, we are more than blessed.

We are very excited to be attending the 3rd annual microtia/atresia conference next saturday/sunday. The doctors that are doing Aaliyahs surgery are coming out and speaking. Aaliyah will also have an individual consultation with them on sunday. We met them last year and they are SOOO lovely. They pay their own way over and do the consults free of charge. They also do alot of work with kids in third world countries. They pioneered this surgery! There are other doctors speaking, including a plastic surgeon from melbourne, whilst he isnt doing the exact operation that Aaliyah is having, I am interested to hear what may be coming up in the near(ish) future! It is also nice to get together with other parents from around the country that are all dealing with the same situation as we are.

About a month ago we had an appointment with a genetisist. Aaliyahs pediatrician recommended we see him to make doubly sure that she had no underlying syndrome (which she does not). He has referred us to another plastic surgeon to see if he thinks that they might be doing her surgery in Australia anytime soon. I agreed to see this other surgeon, on the condition that he doesnt suggest whe just chop her ear of like the other doctor did!

Thank you so much for following us and supporting us on our journey. A lot of days, I struggle. To keep up with contacting people. To keep up with the fundraising. To be a half decent mother. To keep my house from looking like a bomb has gone of. To stay awake, ha ha!!! I confess, I am finding it all a bit overwhelming and just plain hard at the moment. My days are long....they start around 5:30am, and end around 10:30, add a 2am feed in there and you can all guess that well Im a bit tired. Its just a stage, I know, but some days its a struggle. So if I take a bit to get back to you, please understand, Im not ungrateful, just busy and tired. I am also learning to swallow my pride and accept help.

Could you all do me a favour. If you read this blog, just leave me a little comment, I would love to know who reads this (if any one at all )... also please, ask me any questions you might have and I will do my best to answer them

xx

updates

Hi all,

Just checking in, its been a while.

We are so excited for the auction happening on Aaliyahs facebook site this sunday, september 11 at 7:30pm. We have some very lovely items up for auction and would love for you all to check it out and of course bid! 100% of the dollars raised goes directly to Aaliyahs operation!!!!

We are also now selling chocolates as a way to raise money also. Many people have asked what they can do to help and we have found that this is a relativly easy way that people can help, it also allows for people on all budgets to contribute to her surgery. Thank you to every single person that is taking a box. I will be doing another order in a week, so if you are interested in taking a box (in the Brisbane area) please email me amyjperdomo@hotmail.com or contact me via Aaliyahs facebook page and we can organise delivery. Those of you that are awaiting delivery, we will be able to start dropping of the boxes from tomorrow. Along with the chocolates I have organised for pamphlets explaining Aaliyahs Journey to allow for transparancy and also for people to become aware of her cause.

Aaliyah is now 20months old and is doing very well. She has adjusted better than expected to being a big sister. In fact she is now waking earlier in the mornings and calling out to see her sister. She loves her so much. I am so grateful that Aaliyah has a sister to share her journey with. I am fortunate enough to not only have two sisters of my own but I inherited two amazing sister in laws when I married my husband. I am so glad that Aaliyah (and Hadassah) get to share that sisterly bond also!!!

Aaliyah is entering the terrible twos in a big way. But she is still an absolute bundle of fun. I am constantly amazed at how fast she picks things up and how fast her vocabulary is expanding. She is coming out with new sentances every day. Although at the moment her favourites are "I dont want it". But she also says beautiful things like "I love you mummy" "Lia's a princess"... kind of evens out the bad ;)

I will leave you with some recent pictures and introduce you to Aaliyahs new little side kick miss Hadassah Aubrey Faith

Aaliyah picking flowers in the backyard

Little miss Hadassah, the girl that made Aaliyah a big sister!!!

Wearing her contact mini hearing aid, dressed up as a fairy

Shopping :) Aaliyah LOVES it

Family photo!!!

Me and my girls, I love them both so much...

ps: true story, when Hadassah was born the first thing I asked was if she had both ears, poor midwife was a tad confused!!! ha ha xx