The advice had to do with my blog, and came from this very creative and sweet lady!  She told me that if my blog is geared toward a more specific group (yes), then I need to keep that focus.  So, basically I need to fine tune my postings and shift more towards kids with special needs.  That’s why I’m here, right?  But honestly, I am trying to appeal to a larger group.  It seems as though I’m trying to please everyone.  And apparently that’s near impossible!  I also don’t want to come off as “preachy”.  Know what I mean?  I’m a normal mom, just like everyone else.  I don’t know any more or any less, but I think that the experiences I’ve had are worth sharing.  And the conclusions I’ve come to (after said experiences) might benefit someone else!  So here we go!

Remember my post about Emma’s diagnosis and how we came to that?  You can refresh your memory here.  I thought about that post a few days later.  I’m sure it left a lot of question marks and I’m surprised no one asked!  But, given these diagnoses, what did that mean for Emma?  How did it change her life?  And so now I’ll answer those questions.  I’ll break it down and give more medical answers.  It might be lengthy.  Bear with me!

Emma was originally diagnosed with Optic Nerve Hypoplasia (ONH) at the age of 4 months.  What did that mean?  To us, not much.  I remember hearing the description to mean that she had limited vision in her right eye, and because of that, it appeared “lazy”.  After seeing 2 of the best pediatric ophthalmologists in area, I was surprised they didn’t fill us in.  ONH is where the optic nerve is malformed or not formed.  Because of that, vision can be severely limited, and in most cases, there is no vision at all.  Emma is a lucky. She has it in one eye only (about 80% of the time, ONH occurs in both eyes).  And the eye that is affected does have usable vision.  Here’s a quick little anatomy lesson.  The optic nerve contains about a million strands or fibers.  Emma contains about 300,000 so that means her vision is only about 30% of what it should be.  But she can still use what she has!  Another cool fact is that vision in the affected eye(s) can sometimes improve!  Even better is that Emma’s eye is improving!  We have since switched pediatric ophthalmologists and now see the #1 guy (in our opinion) who is in L.A.  We consider ourselves to be very lucky that we’re able to travel every year to have her be seen by Dr. Borchert!

Before Dr. Borchert, we tried patching her good eye in order to strengthen her weak eye.  Oh, that was SO trying on everyone involved, especially her.  She hated that patch.  I can’t blame her!  She withdrew from us, and it was horrible to see.  There was a point in time where she was wearing that patch 6 hours a day!  That’s a LONG time for a toddler…she was probably around 18 months old by then.  This was, of course, pre-Dr. Borchert.  Once we saw him, he explained it very clearly to us.  Emma did have usable vision in her right eye.  However, it wasn’t enough usable vision to benefit from a patch.  The vision (if any) she gained from patching wasn’t enough to outweigh the information she’d be receiving from her good eye, if that makes sense.  She’d be missing out on so much more by covering up her strong eye (which, by the way, is about 20/25).  Does that make sense?  Hearing that from Dr. Borchert was music to our ears…no more patching!

She started wearing glasses at 18 months.  We had baby steps with the glasses…but I was surprised that it really didn’t take her long to get used to them.  I really felt like she realized how much better she could see…even at that young age!  I’ll tell you what, I have always made sure, though, that her glasses are nothing short of adorable.  If my girl has to have an accessory on 24/7, it’s gonna be cute, right?  Right now our glasses are purple!  We have some pink ones that need to be fixed (another issue with a kid who wears glasses…we’ve probably gone through 10 pairs since her first!  That’s just how it is!

At the age of 22 months, she had surgery to correct strabismus in both eyes.  That’s the fancy word for lazy eye.  Because her right eye didn’t work very well, it went “lazy” on us.  You can see that in this first picture.  We decided to have the surgery for 2 reasons.  First, we thought that if the eyes were “set” correctly, that would help her poor eye work with her strong eye.  Secondly, we did it for aesthetic purposes.  Forming a child’s self-esteem starts young, and we didn’t want her to feel poorly about her eyes when they couldn’t see straight.  We had already encountered comments by people who just weren’t very tactful.  The surgery was a success.  Even to this day, her eyes don’t really cross unless she’s really tired.  And with her glasses on, they cross even less.

I think that brings us up to speed as far as her vision’s concerned!  So now that I’ve given you a short novel to read, I think I’ll save the other “big” diagnosis, Septo-Optic Dysplasia, or SOD, for tomorrow.  I don’t want to bore or confuse anyone!  But I do want to encourage comments or questions…let’s get some feedback!!

By the way, have you ever seen a cuter little girl with pink glasses?  I didn’t think so!

Emma with her patch on

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