No bad news doesn't mean GOOD news

This blog has been neglected- I apologize.  In reality, Tommy's eye is just such a small part of any given day that I don't have anything to share.  I have plans to post his story about the surgery- but I'm still processing that (yes, it has been 6 months!)

Patch pics even made the Christmas card this year!

We change his contact every day so that the timolol drops don't destroy the contact lens any faster than normal.  (the preservative in the drops can damage the contact- those babies are too expensive to risk it!)  When I first started- weekly changes felt like a huge burden, now daily insertion/removal seems like nothing.  (There's hope for you new parents out there- I promise it gets a little easier!)

We patch 4-6 hours every day- we now use only 1 patch per day.  This seems like such a far cry from when he was about 1 year when we went through 10-12 patches... sometimes in one hour!  (More hope for you newbies!)

Tommy wears bifocals- he doesn't love his glasses, but he generally keeps them on.

One thing hasn't changed- I still wish people had more tact.  Our latest interaction came at our local library.  A little girl (the youngest of 9 children- she's probably ~2 years old) came up to Tommy and pointed at his patch and said "Get that off your face RIGHT NOW!"  It was probably cute, but it irritated me.  Made me sad for what Tommy has yet to face with his peers.  Still want to scream when someone points it our rudely.  (yes, I know she is little, but to Tommy, it's still sad!)

So- basically no news.

He loves the play structure at the ophthalmologist!

Today we saw his ophthalmologist.  I could complain about the doctor-in-training who didn't know much about Tommy's history (hello, please read the chart just a little- basic medical school principle!)  But, what hit me the hardest is that Tommy will have to have a corrective lens in his GOOD eye.  I've been counting on that GOOD eye to carry us through his life.  His good eye was supposed to be the one that will allow him to read easily, to see the chalk-board at school, to drive normally.  All this work on his "BAD eye" was just supposed to be for "back up".  However, he is only seeing 20/25 in the good eye, and it should be better.  Much of me wants to protest- to say that he just didn't recognize those stupid pictures, he's shy, you didn't ask him enough, he's playing.... but deep down I know it's needed.  I also know that this isn't a death sentence for the eye- a small corrective lens in glasses he already wears will not change our life.  I know that lots of kids (with out cataracts) need corrective lenses and can still read, see the chalk-board, drive...  I just don't want it.

Dilated eyes- eye appointment craziness!

 What I know most deeply, however, is that for Tommy- he will take his cues from me.  I cannot show him disappointment.  I cannot show him that glasses or contacts or patching is anything but us working to make his eye as strong as we can.  None of this is about ME.  Tommy is the only one who deserves any kind of pity party- and so far, he is one of the strongest, happiest kids I know.  While he complains about wearing the patch or that he doesn't want a contact- his complaints never last more than a few seconds.  For this, I am eternally grateful.