Not following the rules

It is mid-week, so I don't have time to upload any pics or anything.  But I need to unload/vent a little so I figured I'd give everyone an update.

If you remember, we had a crummy visual acuity test a month ago.  20/400 in the right and 20/100 in the left.  Doc was surprised, so we went back today for a follow up.  After lots of looking, dilation, and more looking - the verdict is in.

Julia's left eye is getting worse and her right eye is getting better.  Go figure.  It isn't "worse" and "better" in the normal sense, but I am not sure how else to describe it.  Basically, her left eye was a bit farsighted, but not anything out of the ordinary for an infant.  It was around 4.75 in June.  In July, during her EUA, it measured 3.75, so the doc figured she was growing out of it.  Today it measured 5.75.  Her right eye's prescription has decreased to around 13.00 and we started somewhere around 25.00 in January.

The doc is actually puzzled.  He has never had this happen and said that in all the books on refraction development, it does not describe this scenario.  It is almost as if the eyes are trying to "equalize" and meet at the same prescription.  Yet that really isn't possible when they are so far apart.  He took a long time to try and explain what "normally" happens and what is happening in Julia.  We talked about the nystagmus and the strabismus as well. 

The good news is that she is trying to use both eyes together and may be able to develop some binocular vision.  That is encouraging.

So for now, we are ditching the contacts.  Well, we will ditch them when her new glasses come in.  Doc wants us to try glasses with the correct prescription for each eye.  Since her prescription in each eye is getting closer together, he thinks the glasses may be a good option.  Hopefully with correction her eye turn will get a bit better, along with the head tilt.  He gave me the option of getting bifocals for her aphakic eye, but we thought it would be better to get her used to glasses first, before we add in the bifocal.  We are also going to stop patching with the new glasses.  We see him in one month to check acuity and everything again to see what we need to do next.  He also is going to share his findings with her other doc to see if he has any other suggestions.  I think my daughter has really stumped him!  This is a little scary as I just want her to develop "normal" vision and follow the "normal" path for kids with cataracts, but she just can't seem to do that. 

I will admit, I was a bit stunned and overwhelmed with the appointment today.  We just can't seem to go to an appointment and just have a "you look great - keep going" as the result.  I guess I just want answers and want to see into the future and make sure this all turns out okay.  Now I just have to figure out how to keep glasses on her.  I guess it can't be any worse than keeping on the patch.

And I can't believe she is turning one in less than two weeks!  Where has the time gone?