It is always a journey.  Every time we have a big appointment that I have been concerned about – like vision yesterday – I think that answers will come.  I think that if I can just get to that appointment, I will know what’s going on with my baby boy.  I will know what comes next.  I somehow always forget that oftentimes answers simply create more questions.  Kiran’s medical journey is not one of clear-cut answers.

We really didn’t learn much.  He has made progress – we have seen that – but he still has the nystagmus (shakiness) in his eyes.  This is okay for a newborn, but by now, it should be gone.  It’s not.  The question we haven’t answered yet is: is the shakiness there because his vision is poor or is there a communication problem with the brain?

His retina looks normal, but the eye doctor wants us to have a couple of tests done to rule out vision problems where the retina would appear normal but may not be.  We will do this in early July when we have an appointment in the genetic eye clinic.

If we can somehow coordinate getting an MRI done while Kiran is already under anesthesia for his g-tube surgery (not sure yet how plausible this is), he would like to get brain imaging.  He is not sure it would be worth it otherwise – it would give us information as to why vision is behind but wouldn’t necessarily change what we are doing to help him at this point.

His only other thought, different from three months ago, is that perhaps the pupil size is factoring into his ability to see.  His pupils are tiny.  If this is the case, it would likely be a someday surgery to enlarge the pupils to help him see better.

So – we keep doing what we are doing.  We practice with the light box and noisy toys and contrasting colors/images.  And we go back in July for more tests.



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