Sunday, January 05, 2014

A Note on Nate

We had our usual 6 month retinal specialist appointment last Friday.  Emma is doing awesome.  Annika was OK.  Holding her own, we think.  For Nate, though, things had gotten bad.  Really bad.

I honestly wasn't paying attention to how badly he did at his eye exam because the previous week his glasses had fallen apart. I've actually never seen anything like it.  On one Sunday both of his ear pieces fell off within hours of each other.  We found a pair of back-up glasses from last year.  But I dilly-dallied about getting the replacement as I dealt with the Christmas holidays.  I had, finally, begun the process of getting replacements when we had our appointment.  But the replacements weren't in.  So Nate was not only reading the chart through dirty glasses--a constant in his life, but also with the wrong prescription.

I really didn't think anything of it when his test went really wrong.  I didn't even pay attention to how he scored.  Did he get a 20/40 or a 20/50?  Couldn't tell you.  I just waved it off and told them about the glasses.

Then we got the imaging done.  And I saw the thing I never wanted to see.  One "slice" of Nate's imaging in his left eye looks EXACTLY like Emma's right eye--her blind eye.  There it was.  This bulb like bulge under Nate's retina with a bit of something floating in it.  It is likely that the "something" is some kind of fibroid or calcification or whatever it is that filled Emma's bulb shaped bulge and made her go blind.

Here I sit with another 11-year-old at risk of going blind.  We've increased Nathan's meds.  Again.  The doctor mentioned doing shots. Possibly.  Remembering that it didn't help Emma.  There's a lot a shoulder shrugging.  We're guessing.  And hoping.

We've adjusted Nate's meds and we'll wait 2 months to see what that will do.  Sometimes I think about if it doesn't work.  Do we do the shots in the good eye to try to save it?  Or in the bad eye before he goes blind?  Or (horror) do we do both?  Emma had only one eye to save, so it was a no brainer.  But Nate's case is more complicated.

And so I go the rounds.  Should I try to get Xanax and bring it with me that day?  Is he brave enough to do both eyes?  Can I prep him well enough to go through the pain and discomfort of doing one eye and have him sit do to the other?  If not, (or just in case not) which eye do we start with?

Meanwhile, I posted on Facebook about our quandary and had an outpouring of support.  And I FELT it.  The love.  The prayers.  So many people who are struggling with their own problems and issues praying for us.  When, really, it's not all that bad.  But I'm grateful.  And humbled.

And if you're the praying sort, will you pray for Nate?  He could use it.

1 comment:

Unknown said...

Jenna, Nate and your family are in our prayers. We love you and will always be here for you if you need anything. *hugs*