Blind

Sorry for the teaser back in this post when I mentioned that Waverly was blind but didn't elaborate or explain any more.  I've had several people ask about it since, and each time I am reminded that I owe you all an explanation! 

When Waverly started one of her new seizure meds back in January (Sabril), she was required to start going to eye appointments every three months since one of the most common side effects of that medication is peripheral vision loss.  We of course chose to continue with that choice of medication because the effects of the Infantile Spasms were much more harsh than the potential vision loss she could face.  So as a result, she now has regular eye checkups. 

At her last check up a couple of weeks ago, the doctor was doing his normal exam, but started to mention how she was inconsistent in her response to visual stimuli.  Sometimes she would notice or "see" it, sometimes not.  He started to ask lots of questions about what she seems to see and pay attention to.  As I explained to him, things started to dawn on me.  We've known for a while that she was far sighted.  But the things she most pays attention to involve lights and sound (faces, tv, toys with flashing lights, trees blowing outside, windows, ceiling fans).  When either of those are removed, she doesn't seem to "notice" as much.  The only exception to that is faces.  However, when she is looking at a face, often that "face" is talking to her (i.e., making sound).  The doctor mentioned a term, Cortical Visual Impairment, that I'd heard before in reference to other children with brain/neurological issues, and said he considered her to have that condition.  He explained that although we know she can see, it is unclear exactly how well she can see and how well she can actually process what she sees.  Her eyes have vision, but there is some sort of processing deficit from her eyes to her brain.  Of course, that makes sense given that she is missing brain matter! 

The American Printing House for the Blind website defines CVI as this: "Cortical visual impairment (CVI) may be defined as bilaterally diminished visual acuity caused by damage to the occipital lobes and or to the geniculostriate visual pathway. CVI is almost invariably associated with an inefficient, disturbed visual sense because of the widespread brain disturbance." 

I was fine with all of this since we know she has issues with her brain and since I'd even heard the term CVI before and knew of children with it.  But it was when he mentioned that he would fill out any necessary paperwork for services for the blind that hit me.  Services for the BLIND?  So she's blind? 

For some reason, using that word hit me differently.  It's never fun to get yet another diagnosis to add to the list.  That list is ever growing and it's almost absurd how a new diagnosis can be added at any given appointment on any given day.  We'd always joked that her eyes and ears worked fine.  Obviously that wasn't true anymore either. 

So, it's not that anything about her or her ability to see has changed, it's just been made more official.  Our baby is now also blind. 

I can hear you saying, "But I've seen her interact and notice things.  I know she can see!"  Yes, we know she can see too.  But it's just not clear how well she can see or how well she can process what she is able to see.  So, she is technically blind.

That's one thing about "this life" that is so interesting.  On any given day, at any routine appointment, you can get slammed with something that you weren't expecting at all, and all of a sudden you are asked to deal with yet another blow, even if it seems small to someone or not a big deal or seems maybe not even totally true (see the paragraph above). 

One thing we are so very thankful for is the fact that she can see some.  We know she obviously reacts to people and faces.  She makes eye contact and communicates through those sweet little eyes, with her sweet little coos and smiles.  When she was born and we got her initial diagnosis of Lissencephaly, one of my biggest prayers and hopes was that we'd be able to see our baby smile.  The Lord has blessed us so incredibly with a resounding "YES!" to that prayer, so even in light of this new diagnosis, we are thankful for the blessings He has poured out to us in our sweet baby girl.