The Post I Didn't Want to Write

March 2014

Part of me has kept hoping that if I don't write this post, that it's not true.  Yet, time and doctors appointments march on and truth is truth whether I want to write it down or not.

Nathan is not doing well.

There.  I said it.  His last several test for macular degeneration have all be successively bad news.  It is as inexplicable and the good news from 9 months ago.

In January, Nathan had a 6 month follow up appointment along with Emma and Annika.  Emma's eye checked out great.  Dr. Cory thought Annika was in good shape as well.  But Nathan was dramatically worse. Dramatically.

I called our pediatrician, who is also a dear friend.  We increased Nate's meds by 50%.  And waited for two months.  March 4th was reckoning day.  I brought Nathan and Annika in for appointments.  Annika was decidedly doing better, but for Nate it was as if we'd done absolutely nothing.

******

July 2014

My goal when I began writing this post months ago was to go into detail on a somewhat scary, but necessary procedure that my retinal specialist thinks will help.  Despite the tone of opening of this post, I felt incredibly calm about the whole thing.  And was somewhat, un-rushed about pursuing the additional procedure which we cannot seem to get insurance approval for. (Something about Nathan not being able to have "age-related" macular degeneration at 11.  While that fact is technically true, it's the only diagnosis that matches his symptoms.)

Meanwhile, Nathan has now had two appointments with more inexplicable good news.  But it's not quite good enough.  And Nate still needs the expensive PDT and we've made no headway with the insurance.

So we've set a date in Sept.  If the insurance won't pay, Wendell and I will pay out-of-pocket (possibly with some family help) and the doctor will donate his time and laser so we can just Get The Thing Done.

The doctor is quite confident it will help.  Still, we both (the doctor and I) recognize that we are using Nate as a guinea pig because of his age (older than Annika), situation and having and eye to give.  (Unlike Emma, who only has one good eye.) Which isn't exactly the kind of thing that makes a mom comfortable.

One the flip side, if we don't do this procedure and he gets huge lesions in both eyes.  Well, that's not a good option either.

It's a weird place to sit, with no easy answers, but a decision that must be made.  And regardless of the outcome, there will be consequences to be paid.

Nate rockin' Wendell's Oakleys. 

The Backstory: Part II

After surveying family about who would be a good eye doctor, I was ready to make a phone call.  My sister had raved about her eye doctor, but noted that they usually teamed up with one optometrist and one ophthalmologist--with adult patients.  With the kids, she'd told me that they usually just sent in the optometrist.  So when I made the phone call, I specified that my daughter had something really weird going on and she absolutely must see the specialist.

I was reassure and double reassured that I would get the ophthalmologist.  Imagine my disappointment when an optometrist walked in.  I didn't know the doctor I was supposed to see, but I could read the name tag and this wasn't him.  I asked about the other doctor, but the man said he would be seeing Emma today.

Even though it was some 9 years ago, thinking of this first traumatic appointment still makes me angry. Ultimately, it taught me to be a better mother.  It taught me to decide what would happen in an appointment and what would not.  But at the time, I was a 27-year-old mother of three with my oldest daughter in the patient chair for the first time.

The appointment began, as appointments usually do, with a standard eye exam.  Even though Emma was only 4, she could read and had long known her alphabet.  I encouraged the doctor to test her using letters.  He insisted on the picture eye test.

First, Emma's left eye was tested.  She could make out most of the pictures and it was essentially hunky-dory.  But when he covered her left--through that little machine that you have to look through--and began to test her right eye, things went awry.

"What to you see?" the optometrist with slicked back hair asked.

"I can't see," Emma said.

"Of course you can," Slick Hair snapped. "What is it?"

Ever resourceful, my bright daughter said the name of last picture she had seen.  "It's a birthday cake."

It wasn't a birthday cake; it was a hand.  But partly satisfied Slick Hair flipped to a new screen.

"What's this one?"

"A birthday cake."

"How about this one?"

"A birthday cake."

"No, Emma," Slick Hair said sternly.  "You're getting it wrong.  You are just saying the last thing you saw.  What do you see?"

"Nothing."

"It's a duck," Slick Hair said with his voice beginning to rise.

"Perhaps," I cut in rather timidly, "she can't see it. Can you make it bigger?"

He did and it didn't help.  Emma varied trying to tell him that she couldn't see and wildly guessing at the pictures based on any other information she could get.  For every wrong answer, Slick Hair started giving her the right answer.

"No.  It's a duck."

"No.  It's a horse."

So Emma started copying him.  Whatever he said last, she would say.

"No!" he said dripping in frustration and sarcasm.  "You're just saying whatever I'm saying!"

There was a moment of silence.  This part of the appointment had gone on excruciatingly long. Sitting in the dim room with an angry man behind her, she extended her four-year-old hand in my direction and called suddenly, "I'm scared!  I can't see anything."

I rushed to her side and held her hand.  My mother bear stepped in.

"I don't know what's going on, but she can't do this.  We're done.  When do we see Dr. Olsen?"

He flicked the lights on and pushed the machine out from in front of Emma.  "You're not seeing Dr. Olsen today.  You're just seeing me."  He flicked a switch that would summon a young woman to give eye drops and stormed out of the room.

I stood by Emma who was scared and whimpering.  I was worried about her eye.  But I was livid at the doctor.

Once her eyes were dilated and she'd calmed down, Slick Hair came in again and held up a little tool and, with a light strapped to his head, looked at the back of her eye.  He looked in her right eye, then left, then right.

"There's something in...her...eye..." he admitted.

Emma squirmed under the glare of the light, the closeness to the mean man, and exhaustion from the length of the appointment.

"Hold still!" he snapped with his voice rising.

"She's tired," I cut in.  "Can we be done?"

"No.  There's something wrong," his voice became...panicked.  "Stay here.  Let me make a phone call."

My mom had come to this appointment with me and was sitting with my one and two and a half-year-old sons.  She'd been sitting in the waiting room a long time.  I came out to check on them.

"My this is taking awhile," Mom observed in her extra chipper voice when she really wants to be done.

"There's something wrong," I informed her.  "He's calling someone.  I think he wants us to see someone else right away.  Do you have time?"

A look crossed my mom's face.  One of worry and forced calm.  I could tell that she had mentally just cleared her schedule.

"Absolutely," she answered.

The Backstory: Part I

I've been working on polishing up my blog, a bit.  And I'm in the process of making a page all about my children's eye condition.

Suddenly, it dawned on my that I've never shared about the backstory.  Because, really, this story began in 2003 when we were learning that Emma had a problem with her right eye.

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On Emma's 4th birthday we gave her breakfast in bed.  She asked for a donut and baby carrots.  It was totally cute.  But, as we looked at the pictures later, (this was back in the day where we had to develop them) I realized that she kept closing her right eye.  Looking up, grinning, cute as can be, but only looking at us from her left eye.

I set up an annual well-check with our pediatrician.  Even though Kindergarten was more than a year away, they did a kind of Kindergarten check up complete with a vision check.  When we checked Emma's left eye--everything was fine.  But on her right...  She'd only give us answers while peeking with her left eye.

The nurse blew it off as normal preschool behavior, but I knew Emma and this was very atypical.  When the doctor, a dear friend, came in to check her I asked what he thought of her vision test.  He flipped through a few pages, turned a couple of papers over and said, "I have no record of a vision testing."

I told him of her weird response.  And he had me march her out into the hall, sporting nothing but her underwear, to do the vision exam himself.  The left eye was again, OK.  But the right...  I eventually had to hold the eye stick--you know, the one that looks like a lollipop--over her left eye.

"It's OK, Emma.  Just tell us what you see," I comforted her.

The doctor pointed to the largest picture--the picture equivalent of the giant E. "What is this?" he said gently.  We hadn't gotten an answer for a single picture that made any sense.  Asking about the big picture was a base line.

She strained, doing her best to look.  She shrugged a bit and said, "An 'X.'"  The picture was a boat.  A big, giant boat with a sail.  For a moment, the doctor and nurses thought that she didn't understand.  "These aren't letters.  They're pictures," someone said.  It didn't matter.  It looked like an X to Emma.

"Perhaps," the doctor said, in his pediatric doctor tone, "you should set an appointment to see an eye doctor."

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