• 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.
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Two hospitals, 295 miles apart, in less than 4 hours. Beat that!

4 am. That’s when my alarm went off this morning. 45 minutes later Danny and I were on the road to Bakersfield to see Dr. Tawansy, his retinal specialist. We don’t go often (once or twice a year) to the high risk / ROP clinic Dr. Tawansy holds at Kern Medical Center. We don’t really need to. But lately I’ve noticed that Danny’s left eye seems to be shrinking back into his head. So, off we trudged to the valley.

It’s weird to sit in a tiny room surrounded by non-English speaking mothers and their micro-preemies with my ginormous 3 year old who weighed in at a respectable 7lb 3oz when born 5 weeks early. I feel like a poser.

It was mostly good news today. They eye drops I stopped over a year ago without asking permission are no longer necessary. In fact, The good doctor said I probably did the right thing since he obviously doesn’t need them. Ha! Take that Daddy-O!

The Incredible Shrinking Eye, however, is every bit the harbinger of possible bad things to come that it would seem to be. It seems his eyes aren’t producing/generating – whatever eyes do – enough pressure to maintain proper eye size. This is fairly typical and to be expected. Unfortunately, if his eye shrinks below 50% of it’s normal size it can start affecting the growth of his eye socket. Which would require the use of schleral shells to help act as a “place holder” for the eye socket. They are sort of half-prosthetic eyes that fit over the real eye. Sound really uncomfortable, doesn’t it? Well, we’ll follow up on that later.

But here is the shocking news. Danny has light perception.

Did you see how calmly I said that? Like it’s no big deal? Yeah. No big deal. Except Danny can see something! Even if it is only light. It’s more than we ever thought he could see. More than we thought he ever would see. Can you see my smile from there?

When Dr. Tawansy shined his light in Danny’s eye, D squinched his eye shut, shied his head away and brought his hand up to block the source of the light. And the doctor had never touched him. But he did nonchalantly confirm the light perception when I mentioned it. Holy cow!

We got home at 1:30. Just in time for Ben to call from school crying because he’d fallen on his injured wrist again while playing soccer at school. sigh

I left Danny at the sitters, picked Ben up from school and headed to my second hospital in four hours. So much for working a few hours today.

Turns out Ben has a Buckle Fracture in his wrist. It’s when the outside of the bone buckles but doesn’t break. Like a green tree branch when you bend it.

They put a soft cast on it and we go to see an orthopedic doctor tomorrow or the next day for a cast. He may not be able to play soccer which starts this week (and which Daddy-O is coaching).

I finally got home for the day at 4 pm.

For anyone keeping track, that was 11 hours of driving/waiting room time, 295 miles, 2 hospitals, 1 splint and 1 medical breakthrough all in one day.

I’m pooped!


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