Thursday, 13 October 2011

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.