Putting it into words can be hard….

….hearing it can be harder.

I took Jude to the Opthamologist today – we’ve known for a while that there were potential issues with his eyesight and while the doctor wasn’t able to make a diagnosis it was fairly clear from what he was saying that Jude either doesn’t see or doesn’t process what he sees, either way not great.  I was asked whether I would like Jude registered as visually impaired..I turned that down for now, no benefit to Jude or us at the moment.

The little man has been referred for an EEG that will measure the electrical activity in his brain in response to light. It will tell us whether messages get from the eye to the brain but it won’t give any indication about whether Jude processes what he sees.

The more I learn about Jude, the less I understand.

judemarch09

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6 thoughts on “Putting it into words can be hard….

  1. If you have access to one, I’d suggest trying to find a Low Vision Specialist.

    I had taken Emma to an ophthalmologist and he could tell us that her eye balls were fine, but that he thought she could only see light & dark, shadows, and movement. I was told about a Low Vision Specialist and took her there. She specializes in kids and is great about non-verbal kids. She was able to tell us that Emma could see, but not very well. Her vision was 20/200, legally blind. With a pair of glasses, Emma’s vision has improved to approximately 20/50. And she doesn’t have a full prescription yet.

    The glasses have been amazing!!! She studies our faces now, and you can tell she can see things. She’s more active and interactive with toys. We went from thinking she had practically no vision to 20/50. It’s been worth it. And a perfect pair of indestructible frames don’t hurt!

  2. Love the hair Jude … hate the news but mommy and daddy are going to make heads or tails out of it,just like they always do.Keeping you close in thought,as always.

  3. reinforcing ANDI to be honest- it’s not great news but its important- Jude communicates, this needs to improve – knowledge gives you the means to adapt how he and you learn to communicate. It’s not just about what he sees but how he uses the communication of all kinds he gets. It must feel like they keep reinforcing the negatives somedays. I suppose they don’t see our Jude – they just look at the physical side.

  4. Hey Ian,
    Hang in there-Kira’s had the visual EEG done twice (Berkeley, CA and SF, CA, USA) and we feel better having had it done. The test is pretty easy, as long as the babe is awake. They plaster a few electrodes on (much fewer than for an EEG) and baby sits in front of a video screen, in your lap. The video plays some “test pattern” thingies for a few seconds, and that’s all. Definitely our easist visit to the eye doctor.

    In Kira’s case, both tests showed there are signals going from her eyes to her brain, though her behavior shows otherwise (no tracking, no gaze). But that test gave us hope that she might be seeing something, maybe she will improve. I figure a little hope is better than none. Hang in there and I hope you have good news. It is so hard to know what our kids see.

    P.S. Love his hair! So cute!

  5. Ian,Rachel

    Just Confirming what others have said the EEG is painless test, we had it carried out twice on our eldest Josh and it confirmed he had a condition called Congenital Nystagmus, basically both his eyes wobble and he has low pigmentaion , thus reducing vision ,to us it would appear that what he sees would make the world he sees wobble, but that’s not the case he just needs to focus on what he is looking a bit more than other kids would need to.We have been seeing specialists since he was 6mths old and its only in the last couple of visits that we are beginning to learn how his vision is coming on, so hang in there and i hope all will be well with the little man.

    P.S Crongrats on Wolves Getting promoted

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