Tuesday, August 7, 2012

The journey continues... it just takes a different turn

Recently in July we went to Perth to get some appointments out of the way, one for the paediatrician and one for Cooper at WAIDE. Now some background history on Cooper from about 18 months he has had some chronic issues with his wax and we begun a referral process, this took approximately 18 months for us to get him the help he needed, this begun with wax removal. At this point we had no idea if his hearing would improve once his wax was removed. Once this procedure had happened unfortunately Cooper's hearing didn't improve at all :( two tests later and he was experiencing mild-moderate hearing loss. 

Quite often we had to resort to nearly yelling at Cooper to get him to hear us especially in noisy environments. And other times we would ask him to do something and he would simply not hear us, this caused us a lot of frustration. I knew something was really wrong one day when I called him from behind in a clear loud voice about 6 times, then I yelled 6 times no response he didn't turn around and I clapped loudly and he finally turned around. 

Shortly afterwards we had self referred Cooper for help from WAIDE because of his hearing. At this appointment because of a recent cold, we discovered that his hearing was dreadful. Imagine being relieved to see that he is not responding well to a test because it finally confirms how you feel. He was not able to lip read, he couldn't hear the audiologist calling him from behind. He really struggled with the testing and a little inconsistent. We also were able to see how his ear canals looked, they are so narrow I was shocked. 

All in one day Josiah was diagnosed with Hypermobility and Cooper with a hearing impairment. We realised that two appointments in one day was possibly not such a great idea! Initially I was quite shocked as we were told that Cooper will need hearing aids and people have had hearing aids for less than what he had. 

The whole experience caught me by surprise it scared me, thinking that I didn't have the energy to fight for another child if that makes sense. The reality of my eldest son's diagnosis is that I have had to fight for every little bit of help he has got. I have had to educate most people on what his diagnosis is, deal with the frustration when people speak about him in the wrong way if they misjudge him, if they don't understand his diagnosis. When people who have medical degrees say that he will grow out of it. 

I have realised this experience has taken it's toll. Do I feel anxious lots, do I worry sometimes every day I send him to school sometimes. When I see the exhaustion on his face after a normal day at school, I realise how much each day it takes him so much energy just to do what each normal kid is able to do (mostly). I understand that his report shows he is doing well, that type of score does not reflect how he is coping. It is all just a waiting game for me to see if he will continue in going well or not.

In the midst of my self analysis, I felt a small still voice I would call it God tell me "don't worry about Cooper, you don't have to fight for him like you do with Josiah." So since his initial appointment with WAIDE we have seen Australian Hearing and they have carried out hearing tests and decided that he needs a bone conduction hearing aid. This will be installed in the next few weeks. I will write some more about this in my next posts. So I ask myself how big is my plate:) have I got too much on my plate or did it just get bigger?

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