• The boys and I

  • A Little ‘Bout Me

    I’m 44, married and live in a sewerless small town on the central coast of California. I am an Inflammatory Breast Cancer survivor. My passions are reading, knowledge, shopping and photography – in varying order depending upon my mood. Though I’ve always wanted to be really good at something, I find that I’m just pretty good at most things. I live with my husband, Daddy-O, and our sons, Ben and Danny who are 10 and 5. Ben has ADHD and enough natural energy to power the Pacific Time Zone… and he’s not afraid to use it. Danny has Norries – a rare genetic disease causing him to be born blind. It’s a crazy, hectic life but I can’t complain any more than usual.
  • I Have Issues...

  • Tweet Me

  • Enter your email address to subscribe to this blog and receive notifications of new posts by email.

    Join 12 other followers

  • Advertisements

Shell Game

Good news.  Turns out Danny had double ear infections.  His hearing became much better as the infections cleared up.  I am still troubled by his occasional comments about ear ringing.  I’ll withhold excessive worry about impending deafness, however, until A)I’ve managed to get him a hearing test and B)I free up some space on my Worries card.

In the meantime, I’d like to introduce you to my next medical dilemma.

Adorable face, is it not?  Despite his never-ending malaise this winter and his general hatred of having his picture taken he still manages to look cheerful.  Certainly more cheerful than Mommy is looking these days.  There might actually be some sort of reverse correlation going on.  I just can’t prove it.

Notice anything different about his right eye?  It seems to be sinking back into his head.  Probably because that eye seems to be shrinking.  Dr. Tawansy warned me this might happen.  The eyeball is a spacer for the eye socket.  If a child loses one or both eyes before his skull fully develops there is bound to be some deformation.  The solution is prosthetic eyes.

Of course, Danny still has both of his eyes.  They are just abnormally small due to the Norrie Disease.  In his case he will need scleral shells.  Scleral shells are sort of like an enlarged, thickened contact made of plastic that can be placed over the original eyeball.  They make a mold of the eye socket using a material similar to the stuff a dentist uses for impressions. Danny is sure to f-r-e-a-k!!! I have no idea if this is covered by my insurance but the fitting fees are in the $2500 to $3000 range.

So, that’s all the bad news.  The good news is that his eyes will look completely normal once he has shells.  Oh, Heaven.

Here’s a question for you:  what color should we make his eyes?  He was born with brown eyes like the rest of us.  However, his eyes have been blue since infancy and that’s what he’ll tell you if you ask him what color his eyes are.  His blue eyes are striking with his dark coloring.  I must admit I’m partial to that.  But he’d fit in with the rest of the family better with brown eyes. Just out of curiosity Daddy-o asked Danny what color eyes he’d like to have.  His answer:  red.  Or green.  But really red because he likes red.



One Response

  1. Hey Stell, not sure how I missed this post when you first put it up, but you may want to talk to Ken at some point – the scleral shell sounds a lot like what he has. He was quite a bit older than Danny when he got it, but he might have some insight into talking Danny through it…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: