upcoming appointments, hearing aid issues and a note to other parents

Next week is a biggish week for us. Aaliyah has her 6 monthly check ups with the ENT (ear doctor) and her Audiologist. These appointments are important as they help us monitor how well she is doing against "normal" hearing children, to track her development, detect any areas that need addressing as well as monitor her overall health.They also look at her "good" ear to ensure its not built up with wax, this is important as that ear is her main source of sound. We are very blessed that Aaliyah has a fabulous ENT and a great audiologist. If you are in the Brisbane area and have a child with any ear, nose or throat issues I can HIGHLY recommend Dr. Chris Que Hee. He works both public and private. We are fortunate enough to seem him through the public system so we are not out of pocket any expense. He is very thorough and is more than happy to answer any questions we have. He has also been extremely honest about Aaliyah's condition and the challenges we should be prepared to face. I appreciate this, he doesn't talk to us like we are dumb (unlike many other health professionals we have encountered), we find him very reassuring. Aaliyah's appointment is on Tuesday at 8am. Wish us luck..... we are not morning people in our house, so getting into town, with peak hour traffic, at that time of day will be a challenge for me.

Audiology is up next, on Friday 27th May. Her audiologist tests her hearing in her good ear, as well as test the hearing in her affected ear, both aided and unaided. Her audiologist is also fantastic. She specialises in pediatrics so she knows what to expect from kids. She is also a mum so has empathy as well. She takes her time and is very good at explaining things to us.

We are so grateful that Aaliyah has an appointment next friday as we are having MAJOR issues with her hearing aid. IT IS SO FRUSTRATING!!!!!! The headbands she has to wear with this particular aid are special with snaps on it to hold the aid in place. All of the headbands provided with the aid have stretched over time and now are not tight enough when we put it on. Basically it ends up whistling and making an awful noise everytime we try and put it on her. We have tried the smaller sized band, but it is too small, I washed all of the other bands in hopes that they would shrink. They hold their size for about half a day then stretch out. She only has two head bands that she can wear with the aid. I cannot keep up with washing her headbands EVERY SINGLE DAY. We are hoping to get some more headbands on friday or they adjust her aid so that it does not need as much pressure for it to be functional. As great as Australian Hearing is they are no good at updating hearing aids etc. We had to go through all kinds of rigmarole just to get Aaliyah the aid she has now, so I really don't like our chances of getting more bands. I am hoping they have some kind of sympathy for us and sort it out though. No use having a hearing aid if she cant even wear it. And if she isnt wearing it she is missing out on so much stimulation.

On a different not, I wanted to take a minute (or ten!) to talk to other parents that have children that may be facing their own challenges. Do not always go with whatever the first doctor tells you. Do your own research. Trust your "mummy" (or "daddy") instinct. If we listened to the first doctor we encountered we would have believed we would have no options for Aaliyah, to just expect she would be behind and we would have chopped her little ear of by now. Now, I am not saying to trust Dr. Google for everything, our health professionals know their stuff , but they are human. I know, I work in the industry. I am so grateful that I chose the profession I did as this has helped us greatly in our journey. We have also discovered that it is not what you know but who you know. When we first had Aaliyah, we waited and waited and then waited some more for the promised doctor that was going to come and explain what was going on. We only saw somebody because my sister, Jess has friends that are doctors and on "just happened" to be working at the hospital that I had Aaliyah at. Within 15 mins of her phonecall to him, he was there with a whole team of consultants. Whilst they didnt have all the answers we had hoped to get, it was reassuring to see SOMEBODY none the less.

There have been many instances where knowing somebody has definitely has paid of for us.... I will go into more detail in a later post... but just remember this, YOU are the parent, YOU can help shape your childs future and YOU do not have to always go with what the first health professional tells you. Research, talk to other parents, look online. If you are a parent of a child with microtia, there are several online support groups, including a facebook group. If you are in Brisbane there is also a support group that meets once every 3 months, that has various specialist speaking to help educate and inform parents of their different options. It takes extra effort, but really, who wouldn't go to the ends of the earth and back again for their child?

Well thats my rant over with, sorry if the post was long winded and a bit all over the place, I still have baby brain from Aaliyah and Im also pregnant so probably not the best time to be writing anything of substance :)