Permanent chauffeur

Today we had a regularly-scheduled visit with the ophthalmologist.  I had been looking forward to this appointment for a while because I felt like lately, probably the last month or so, she really had been struggling more often to see things.  My biggest concern going into it was, "will I pick out new frames for her? Or stick with the purple?"

She was the most cooperative I have ever seen her at the eye doctor, ever ever ever, and she's been going since she was three months old.  I will excuse the bucking bronco act during the eye drops because they truly do suck, and think more of how she complied with 85% of all of their requests for reading letters on the screen and holding things up to her face and letting a bright light be put in her dilated eyes.

Until the doctor himself came in (there are always at least two, if not three, visits by other people - fellows, residents, orthoptists - before the doctor actually sees you) and then she started losing her marbles.  Usually this is just time for me to talk to him, so her requirements include, "be quiet," but, you know, it's hard to not whine for more than 90 consecutive seconds when your mother isn't paying attention to you.

I was eager to know if her prescription had changed, because it would explain a lot of what we had been seeing.  And of course there was absolutely no significant change to her prescription, other than they thought maybe adding some prisms to her lenses would help (explanation below).

I told him that we had been noticing her struggling more, and his response was that he expected that.  That as she got older and had more visually rigorous tasks (reading, writing) we would notice her having a hard time.  And that it's not going to get better.  For me what sucks even more is that she really struggles with just, you know, moving around in space.  Walking is hard for her sometimes.  Seeing things at the store.  Looking out the car window at something, "WHERE, MAMA?  I CAN'T SEE IT! WHERE??!?!?!???!!!!"  (Note: People with nystagmus can sometimes have strobe-like vision, which allows them to see or predict moving objects better than the average person (think about seeing the individual fan blades on a moving fan).  This confounds me, and might explain how she can hit a pitched baseball, but could not follow dance instructions from six feet away).  

How stupidly naive of me to think that it was just a matter of a more accurate prescription.  I mean, I know that eye glasses cannot fix nystagmus, but I liked thinking we had skirted by the really shitty stuff, and that the surgery (although still very successful) had pushed us back toward mainstream.  The reality is that she has really crappy vision, and nothing is really going to change that at all.  There is a "best that we can" level.  For the first time since we received her diagnosis, I'm starting to truly doubt she will ever get a driver's license (in the past I was always very positive about it, at least).  

We are diving head first into more intense PT again, because I just want her to be able to PLAY with other children her age.  I don't know how to explain it to other people, who always deadpan to me, "well she looks fine to me."  Yes, she looks fine.  I realize she doesn't have a tail, or a second nose, or four ears.  I think she looks more than fine, and she's borderline very adorable/gorgeous/beautiful.  But that still does not mean she can see a goddamn thing, or run and jump and climb.  Yes, she has figured out adaptations because she is smart, and I'm glad she has glossed over most of what you might notice right away, but she cannot do what most other kids her age can do.  I don't want to single her out and overly-explain this to everyone, because it's nice sometimes to just fade in seamlessly, but the reality is that this is her reality, and SHE CANNOT SEE.

She has a cross-eye situation going on as well.  There is the possibility for more surgery to correct this, as it inhibits binocular vision (using both of your eyes at the same time).  Nystagmus itself makes binocular vision difficult, so this eye crossing is adding insult to injury.  The surgery will not be magic, but it could knock away a potentially unnecessary hurdle.

Back to the prisms.  Adding prisms to corrective lenses is a non-surgical way of correcting a muscle imbalance in the eye, which may pull the eyes closer together (cross-eye) or push them apart.  The prism tricks the brain into thinking that the eyes are working together.  Having lenses made with prisms in them is more expensive than having regular lenses made (and those regular lenses may already be expensive if you have a severe astigmatism *ahem*), but you don't know if the prisms will help the vision without actually using them.  They have stickers (OK, so the official name is "Fresnel Prism") that they can put on existing eye glasses in lieu of having the lens made seamlessly with it, but they look like vertical blinds, and are impossible to see out of (at least in my opinion when I've held her glasses up to my eyes).

Google Image search tells me that Hilary Clinton has worn a Fresnel Prism, apparently to help binocular vision after she had some kind of head injury.  As you can see, it would be difficult to convince a four-year-old to keep that on their lenses (and Bug would have them on both).

So you're between a rock and a hard place.  Obviously my kid doesn't want to wear the stickers as they are cumbersome and awkward to see out of, so we have no idea if they will work.  But if they (the new lenses) would help her, even for a short time, why wouldn't I want her to have them?  It's a $300+ gamble, not including the lenses they would have to remake without the prisms if we didn't get the results we wanted.  There is a tiny minuscule chance that insurance may cover them but I am not holding my breath (but if there is a chance, you're damn sure I'm going to find it).  So we wait and see.  

I forgot her sunglasses in the car.  Subtract 50 Mom Points.

After her appointment we went to get a smoothie, but the joke was on us, because it was REVENGE OF ALL THE BUGS EMILY HATES.  While we were sitting outside, she got stung by a bee that flew up her skirt that she then sat on.  I had just called the insurance company to ask about the glasses when she started SCREAMING and I was all, "I think my child was just stung by a bee."  Woman: "Do you need to call back?"  Me: "Yes, I will just call back."

Before the bee situation.

She's screaming her head off and I see the bee sitting lifeless in the middle of the chair.  It has stung her right where butt cheek meets leg, and a giant welt is forming.  I know relatively few things about bee stings as I am like mortally terrified of bees (you'd think I'd know more about treatment then?) but I think I remember something about ice, so I pick her up and carry her into the smoothie place, still screaming.  Of course the woman in line at the register CANNOT MAKE A DECISION about what she wants to order, and I don't know what else to do except wait politely in line behind her and futilely try and get Bug to calm down.  I approach the register and literally yell, "MY KID WAS STUNG BY A BEE (I want to make sure he and everyone else around me has heard this part, so they know why we are screaming) CAN I HAVE SOME ICE?" and he just sort of looks at me and says, "sure," but then remains at the register.  I'm about to get all WTF in his face when I turn and the blender guy hands me a small styrofoam cup of ice.  

We go back outside and I hold an ice cube to her poor little tush.  She has become alarmingly mottled from all the screaming (ginger problems) and I'm worried how I'm going to tell this from some ER-necessary rash.  I text my RN friend and because she's awesome she responds right away and, you know, talks me off my ambulance ledge.  Bug calms down and the splotches calm down and after repeated questioning she informs me that, "YES, Mama, my tongue feels FINE."  

Then we walk back to the car and somehow I have parked on top of some angry ant colony because when I open up the rear passenger door there are ANTS CRAWLING, EVERYWHERE, ALL OVER THE INSIDE DOOR FRAME OF THE CAR OMG OMG.  Upon further inspection they are also all over the outside rear of the car MORE OMG OMG.  I do NOT do ants.  I throw her in the car and then crawl in through the driver's side to buckle her in.  

We drive to Target so I can order her some new Rx sunglasses (we go cheap with sunglasses versus her regular glasses) and I am disappointed when I open the rear passenger door that the ants are all still there.

After ordering the glasses we stop at Starbucks (DUH) and then we sit down in the cafe so I can make a few phone calls for photo-work-related things.  I have her all set up, seated with several snacks, and have just answered the phone when somehow she drops her grande cup of ice water all over the floor.  She immediately does the dinosaur yell because she's mad that she dropped it and, you know, starts demanding new water RIGHT NOW.  I am still on the phone as I stand up, throw the busted cup away, get a new cup, fill it up with more water, and sit back down.  I can do nothing but stupidly watch the ice and water slowly seep its way farther and farther away from us.  I manage to tell two people to be careful of the water as they walk by, but I have not informed any employees because I AM STILL ON THE PHONE.  

Eventually we finish up, I realize that the bottom of my bag has been soaked, and I inform a fellow Starbucks employee that we made a huge fucking mess (it may be important to note that the last time I brought Bug in, she managed to knock a ceramic mug onto the floor).  We book it to yet another appointment for her (go hard or go home, wussies!) and seven minutes into the waiting room she has to poop.  Of course.  And it takes forever.  I am visualizing her chart being moved to the bottom of the pile with each passing minute.  

We get back home AND THERE ARE STILL ANTS IN THE CAR AAAHHHHHHH.  At least they do not seem to have gotten past the rubber door seal into the car.  Why does the clock on the stove say it's only 2:20?  Did the power go out or something?  WHY IS THERE SO MUCH DAY LEFT?  I feel like I have aged several years since we left the house at 7:15 this morning.

She fakes a nap and then we play bingo and go fish outside and she schools me in both.

Matt washed my car and the ants seem to be gone.  Maybe if they got into the house the crickets that always seem sneak their way in would have more to eat.

Tonight I am self-medicating with Papa John's breadsticks.