Wednesday, March 11, 2009


Josh had another great night (which in turn gives me a relatively good nights sleep - yay!)!! I even got up before 8.00am!

At Monday's meeting, a Doctor told us that a test to determine if Josh had vision had been organised for today. At first, the specialists didn't know if Josh was suitable, because his eyes weren't looking forward. They were going to postpone the test to the afternoon, when Josh is more "awake", but I'm glad they decided to try the test anyway.

Some blind people can still know when there is light and when it is dark. We could see this in Josh early on; going for walks outside in his push-lounge, he would open his eyes as we went through the shade of trees, and close them again coming out in to the sun. At night, I have to turn almost every light off except for the lamp before he will sleep, and in the morning, he "wakes" when I open all the blinds, and turn on the main light for the room. He showed that response with the opthamologists too.

They put a couple of probes and wires on Josh's head, like the ones in the EEG, which hooks up to both a kind of flashing light probe "thing" and a computer (my terminology obviously, not theres!). It was a little tricky, but it was determined that he can in fact see, which is great news! We just don't know if the messages he eyes send can be sent and processed by his brain.

That info, along with the hearing test (next week) will be put together and the Neurologist will discuss with us further.

Josh also has scarring on both eyes from "dry eye" which we were already aware of from his time in PICU. He doesnt close his eyes all the way when he blinks, and sometimes doesnt close them all the way when he's asleep, and so the eye doesnt get enough lubrication. There are also ulcers on the film of his eyes, which we need to treat aggressively before it causes bigger problems. The Doctor showed me how I need to tape Josh's eyes closed when he is asleep of a night so that the mositure is contained.

Meanwhile, we will continue to read, and show TV and DVD's, and toys etc, but will add some other things like black and white, with red images that are known to attract the eye. The quilt Tan made is perfect.

After the test, we went for our morning walk, but we had to come inside because of the rain. It was also my chance to have breakky! After a while, a young lady came over, and said she just had to say something to us, because she could see the love we have for josh and that it was nice to see, and to keep doing whatever it was we were doing. Awwww. I almost started bawling! Don't know who she was! She didnt look crazy... :-)

This afternoon, I tried to submit some forms to Centrelink... rather than complain, let me just say a big fat "grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!".

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