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 :)
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
