Tuesday, December 17, 2013

Catracks, Concacks, and Eye Drops

Tommy is almost 3 now.  He talks non-stop.  Since he is the youngest of 4, he talks LOUDLY non-stop.  He has become incredibly attentive to things I say.  I first started noticing this when he started, ahem, shouting at the cars to "go fatter" and "get outta da way" and "learn to drive dot!"  I have NO idea where he hear any of that.  I'm blaming his dad.

He has also heard me explain his story a few times lately.  Apparently we've been getting out a bit more and seeing new people, since I've had more "What's up with his eye?" lately.  Or "What's up with the patch?"  I still have a hard time not answering some smart aleck response like "oh, it's just a sticker" or "What?!  What is wrong with his eye?"  But I don't.  Lately, Tommy has been starting the conversation with older people.  It goes something like this!

Older person:  "Hello there little man, how are you?"
Tommy:  "I wear glasses!  I have a catrack when I was borned.  I wear a concack and glasses and patch.  I have 3 sitsters.  I have a dog named Riley.  He peed on the floor.  This is my mommmmmeeee."  (I could go on, he does- but I will spare you)
Older person:  "What?!"

Older people have forgotten toddler speak, so I need to repeat it.  It makes me laugh every time.
Cataracts suck!

Eye update.  We had finally made it to 6 months between eye appointment visits.  I was woefully naive in thinking that we were in the clear.  Smooth sailing from here on out... you know, regular visits just to see if he needed new prescriptions, decrease patching,  easy peasy lemon squeezy.  Wishful thinking, I know.  I just was on this high of no news for so long.  Reality check.  Tommy was born with PHPV.  In general, this just sucks.  The vision screen was a joke.  Tommy was pleasant, but thought it hilarious that he called every picture a car (the old fashioned phone- a CAR!, the house- a CAR! all while grinning at the technician).  She had the gall to call his vision 20/300.  Really?  He wasn't even looking at the screen people!  Not to mention the fact that the pictures are pixelated pictures of things like a car, a house, a duck, an old fashioned car, and a dial telephone.  I'm not entirely sure my 6 year old could recognize these things!  But- we all know the vision screening at this age is just a stalling technique while we wait for the doctor.
I just love this shark hat.


We go to a teaching institution, so we see an ophthalmology resident first.  She does lots of things to Tommy's eye.  This wasn't to be a dilation visit, so it was going pretty quick.  She tests his pressures with a tonometer pen- "23" she says, "great!"  Umm, no, not great. So I say "Really?  That is higher than his usual- he runs about 17."  She says, "oh, we've been having trouble with that tonometer all day, let me get another one."  Second test, "23".  She says, "oh, it's higher, but not crazy high."  I swallow the scream in my throat..."yes, but it is higher, that is concerning." (Mind you, I'm not upset with her, just screaming in my head that this couldn't be true!)  So, she gets another tonometer- same result.  She then gets another tonometer- this one needs eye numbing drops.  Same result.  23.  It's official, the pressure is high.  Now she is more concerned and dilates his eye, and sends us back to the waiting room to let the drops work.  Can I just brag that Tommy was a rock star through all this?
Can we go home?

4 different teonometers, 4 different pressure checks, 2 different eye drops, contacts in, contacts out, 3 different people poking and prodding... and not one tear out of the little man.  Towards the end he kept asking to leave, but overall, much better behaved than me!  We also learned that his eye is drifting more than before, but we will still "keep an eye on it".  Those have to be some of the most frustrating words strung together that make little sense for his obsessive iMom.  I keep an eye on his eye EVERY DAY.  I obsess EVERY DAY.  To say it is getting worse and that we are just going to watch it is KILLING ME.  I guess I have something new to obsess over.

So- we begin a new adventure.  His diagnosis is "Glaucoma Suspect" (this is a real medical term!).  Which makes me chuckle- I picture some villain lurking around (think Scooby-Doo Villain).  We started drops last night so he doesn't become a "glaucoma convict".  Heehee.   We will be starting a study medicine in a few weeks- we agreed that he would join this study, mostly because it means frequent eye visits.  I can watch this pressure like a hawk!  (I looked, they don't sell home tonometers)

He is a trouper- I cried the first time I put the timolol drops in.  I want to kick and scream and yell about how unfair this all is.  He simply says "drops all done!"  I stress out about the side effects of the drops- he is happy that he gets his contacts out every night.  I'm mad at cataracts and PHPV- He happily tells people about his catracks and concacks.  Who knows, now he may even tell them about his eye drops.  I need to adopt his attitude towards all this.  I know it could be worse, I know, I know, I know.

My little superhero.