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!

1 comment:

  1. Hi Amy it is so good for an update. I still think about you guys even though I'm not longer on social media. Have you thought about asking some mummy bloggers for a guest post spot to increase awareness of Aaliyah's journey? I think it could help cos their fan numbers are huge!
    You guys are going to make it. Well done. I hope you guys are well!! Amy (lots of little kids)