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.

Dear Adoring Fans

I love all the "Dear XYZ" posts I've seen.  I'm jumping on board!

Dear adoring fans,
Hello!  Yes, I wear an eyepatch, isn't it cool?  My favorite one is the one with dinosaurs, I like to roar like a dinosaur.  Guess what?  I can see you, even with an eye patch.  These glasses?  Yes, they are real, yes, they work, and no, they aren't broken, it's called a bifocal.  Oh, and I can also hear you, so can my  mommy.

Check out  my cool shirt from Eye Power kidswear!

When you point and stare, I don't really mind, I know I'm cute, you can't help but stare.  I love all of the attention.  If you are a grownup, mommy thinks you are being mean or rude and she says it hurts her heart every time.  Sometimes she says not nice things about you... she forgets that I can hear sometimes, too.

Don't make my mommy sad!

She likes it when you ask what happened, she knows everyone is curious. She doesn't even care how you ask, although she really doesn't like it if you asked if I lost my eye.  She has a story all lined up, it's almost the same every time.  If I cared enough, I could tell you the story word for word.  But, I'd rather roar at you or sing or laugh or cause trouble.  My sisters know the story and often add things if mom skips a part.  Here is how it usually goes:
     Adoring public:  "Oh, did he hurt his eye?"
     Mommy:  "No, he had a cataract when he was born.  It's just like people get when they are old, but he was lucky enough to have it when he was born.  It's really rare.  Since you have to learn to see at birth, we have to make him use that eye, which he'd rather not use.  You are seeing the "bad eye" and we patch the good one to make him use the bad eye."
Now- mommy is from Vermont and she talks REALLY fast, so she ALWAYS gets this part out.  Sometimes your eyes glaze over.  That makes her mad, if you asked a question, you'd better listen.  I hear that a lot in our house "you need to listen!"  Apparently you all have not been taught that by your mommies.  Lucky. 

At least PRETEND to listen!

Some of you ask more questions.  This is good, you listened (you must have had good mommies and daddies!) and you make my mommy feel like she did OK by me.  She will answer anything- and seems to like to talk about it.  (borrringg!)

Borrriinnngg!!

What makes her really really mad and sad and say not nice things, is when you forget we can hear.  Lots of you try to explain to your children that I have a boo-boo on my eye.  This really makes her mad when we've seen you around town and have exchanged waves or small talk.  Please, just ask my mom.  She will be happy to explain (see above!)  She's also pretty good with kids, she has 4 of them, she will happily explain things to your kids.  She also has some experience explaining things to people, she did that in her job for a while.  Do you really think it's better for your kids to think I have no eye or a bloody eye behind my patch?  Think people, think!  That is scary stuff!  My story is much more benign.

Also scary stuff

Oh, and my mom doesn't really like it when you pretend you know what she is talking about when she knows you don't.  When you tell your kids (or spouse or friend) that I probably have a lazy eye, she is annoyed.  I agree!  I am not lazy!  Ask my mom!  I don't like to sleep AT ALL!  However, my mommy will politely listen as you tell her about your sister/cousin/nephew/great-aunt twice removed and how she had a lazy eye and is JUST FINE NOW.  First of all, I am already fine.  F.I.N.E.  Second, in many cases she just explained what was wrong with me, and lazy was not a part of it.  My mommy usually smiles and nods (and mumbles under her breath after you leave).  Again, that listening thing.

Best horse ever.

 

Don't worry if your kids say silly things, that doesn't bother mommy.  Usually your adoring children point and say "look mommy, he has a sticker on his eye!"  Really, I know you are just finding any excuse to point out how ridiculously cute I am.  Admit it, you are also a little jealous that I get to wear a sticker every day.  Do your parents let you wear a sticker on your face in public?  Ha!  Didn't think so!   Kid questions make my mommy smile.  Especially when your mommy acts mortified and rushes away to another aisle in the supermarket.  Mommy knows you can't control what comes out of kids mouths.... and be honest, you were thinking the exact same thing!  If you are within earshot (before your mommy rushes away), mommy will tell you that I patch my good eye to make me use my bad eye.  She may say it loudly so your mom can hear as she is running away. The last time it happened, we saw you and your mommy in every aisle.  Good job mortifying your mom, we heard you say something new each time!!  My mom actually laughed out loud a few times.   (I think this is passive aggressive behavior, she should really work on that!)

So that is my story.  I hate my patch and hate my glasses, but mommy says I have to wear them.  I will have to wear them until I am 8 or 9, she says.  That is old, but not as old as my mommy.  So please, just ask, don't point, don't stare, and for Pete's sake, LISTEN if you do ask!

Love,
Tommy

P.S.  Could someone please tell my mommy that it is completely OK to live on Hostess Donettes?  Why does she insist I eat anything else?

Some Resources for Congenital Cataracts, infant contacts, glasses, and patching!

I've been getting requests for ways to "plug in" to other people going through the same thing.  I remember scouring the internet for any snippet of information I could find, so here is a compilation of things that helped me through!

Parent Blogs:  

In general, these tell about family life surrounding having a child with cataracts.  Many talk about day to day struggles with patching, contacts, glasses, and also about family fun!  These blogs help me survive the ups and downs of what we go through.

Here are the ones I follow regularly (forgive me if I missed any, I'm sure there are more!)

A boy. His brother. The mischief they find. http://thegloverfamilyblog.blogspot.com/

Epis, Patches, Inhalers... Oh My! http://3kids1wish.blogspot.com/

An Ounce of Luck and a Pound of Faith http://ounceofluck.blogspot.com/

Vision is a Gift http://visionisagift.blogspot.com/

See the Distance http://seethedistance.blogspot.com/

 Patches, camo and other random thoughts  http://patchesandcamo.blogspot.com/

There are many more beautifully written blogs out there by moms who have children going through similar issues.  I omitted a few who have either not blogged recently, or those who have changed the focus of their blog away from congential cataracts (etc) and more towards family life or interests.  You can find a few more in my profile and I do urge you to check them out!

Websites:

Little Four Eyes:  This covers issues with any kid in glasses. http://littlefoureyes.com/

  *They have a great post about other blogs:  http://littlefoureyes.com/2012/01/16/new-page-blogs-about-childrens-vision/

  *They also have a Facebook page:  https://www.facebook.com/groups/littlefoureyes/

Child Cataract Network (UK site) http://www.childhoodcataracts.org.uk/index.html

Bausch & Lomb:  I included this, because if you have Silsoft lenses, you will contact them at some point!  http://www.bausch.com/en/Our-Products/Contact-Lenses

Boston Children's Hospital:  Not where we go, but they have a GREAT video on how to put in contacts... I watched this a million times when we first started!  http://www.childrenshospital.org/az/Site666/mainpageS666P1.html

Simulation of vision:  Really cool site.  http://www.billauer.co.il/simulator.html

Facebook Pages:  

Closed groups: You need to request access, which is easily granted, but this makes it a little more private.

People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite! https://www.facebook.com/groups/58073768937/

Aphakic kids:  https://www.facebook.com/groups/139232330344/

Aphakia Group:  https://www.facebook.com/pages/Aphakia-group/121745891227537

Fun Sites (Mostly promotional):

Peeps Eyewear: https://www.facebook.com/peepseyewear?fref=ts

Eye Power Kids Wear:  https://www.facebook.com/eyepowerkidswear?hc_location=stream
  *They also have a non-facebook website:  http://eyepowerkidswear.com/

Little Four Eyes Marketplace https://www.facebook.com/groups/359677530776131/?fref=ts

Instagram:

Check out #Camopatch kids!  Many parents (and some siblings!) will post pictures of their kiddos in patches on Sunday.  Camo patch if you have any!

Patches:

See earlier post:  Fun Eye Patches

Support Groups:

 Yahoo Aphakic Support Group.  You'll need to request access, but this is a great resource.  You can post questions, answer questions, or simply read about what others are going through.

Little Tommy (just because I can't post without at least one picture!)

Allergies and Contacts do not mix

Life just isn't fair.  As if poor  Tommy (and any iKid) didn't have enough to deal with- we apparently have added seasonal allergies to his list of medical drama.  Not great when you live in a house on 2.5 acres of land, 1 acre of which is just trees and weeds (umm, wildflowers?).  

Again?  At the doctor again?

After my last post- I didn't stop worrying.  Each morning I wiped his eyes and hoped that one more day of no contact, no patching wouldn't do long term damage.  Then- on the way into day care I hear "Mommy, eye hurt!" and crying from the back seat.  I am forcing myself not to panic.  I called the eye doctor, well, the receptionist, who basically said "go ahead and panic".  Maybe her words were, "Since he is aphakic, we really should see him right away, come on in."   You all hear her underlying meaning, right?  No doctor's office ever says "come on in" as breezily as if we were old pals.  So, I proceeded to panic until we got there.  What if's played over and over in my head.

We get there, and there was much less fanfare.  We had to wait in the waiting room just like everyone else (never thought THAT would be a relief!)  We saw a technician, who did so many more eye tests than he has ever had- that I was just plain confused.  I finally saw the vision cards that all iMoms talk about!  Tommy could identify the telephone (thank-you Blue's Clues!) but thought that the airplane was a dolphin.  (?)  The bird he called a "ducky" but I was OK with that.  Then she FINALLY gets to the pressures- and they were F.I.N.E. fine.  Breathe.  Ok.  Then the fellow came in with an ER-Doc-in-training.  Tommy was a rock star!  They used lots of different ways to look in his eyes- he let the fellow do it, then let the other doctor test him.  So sad that he lets people poke around his eyes like it is any  normal day.

But- he is fine.  Pressures fine, no infection.  Just plain unlucky.  A week later we are still dealing with copious amounts of boogers from eyes and nose- but no infection.  I'm using antihistamines, but also worry that those will impact the pressure in his eye.  It is a fine balance between long term damage vs long term strengthening of his eye.  It is a fine balance between making him wear the contact and patch for a little bit- and letting him have some comfort.  I'm learning to juggle- and balance- and try to just let go sometimes!

One of the few days of patching time!

Does the worrying ever really stop?

I like to pretend that I'm all zen with this eye thing.  Or, maybe it is that I'm mostly settled with it all if I don't think about it too hard.  I'm still bothered when someone new asks me something stupid, but those questions get fewer as he gets older.  I'm sure the next step is figuring out how to handle kids teasing.  But, if I don't think about it, life is good.

This just makes me laugh and pretty much sums up his personality.

But there are days when the reality of it all comes crashing into my consciousness.  Maybe I'm being too dramatic.  But I got a call to come get him at daycare because he looked like this:


His left eye is the eye with the contact.

Yikes!  What is that.  An allergy?  Is he sick?  I don't know- still don't know.  I take his contact out, we gave him Benadryl and he was fine within 30 minutes.  Tommy is allergic to hummus, my daycare provider had eaten Tahini sauce earlier in the day- we kinda just assumed he had gotten some on him.  No problems.  

Little puffy, but not so bad. 

The next two days he had a fever and was cranky.  Ok, a virus, right?  I'm still quelling this tendency to freak out.  Sunday- fine, no worries.  Phew.

Monday, fine, slight rash.  I send him to daycare.  He's cranky, my daycare provider is wonderful and deals with it.  I pick him up and he's puffy and cranky.  More Benadryl.  More worry.  Don't know.

Tuesday he wakes up looking like this:


Who is this??

 More panic- he can breathe fine (no asthma) so I give him more Benadryl (which, by the way, does NOT make my boy sleep!) and make an appointment with the doctor.   (By the way, his contact is OUT)

At the doctor's office- he looks slightly rashy, but normal.  No puffy eyes.  No swollen face.  AUGH!  I'm not even sure she believed me!  (I did show her photos- she likely thinks I'm crazy).  She says it's probably Strep.  Really?   He also happens to have a double ear infection (oops, he wasn't complaining of that!)  Good mom award for me (not!)  Augmentin here we go.

Today (Wednesday) he is fine.  Slight rash.  No puffiness.  In the back of my mind, I worry.  What if it's his contact?  Is he allergic to it?  What if it's glaucoma (not saying I'm rational here)?  What if it is....??  Who knows what.

I swear I didn't worry this much with my other 3....

Back to normal!  (Last night- lucky kid is getting a break from contact and patching while I calm myself)

Crumbs and Eggs

I can vividly remember days when I cried and cried wondering if Tommy would ever be able to see out of his eye- heck, I remember wondering if he'd LOSE his eye.  (I'm not pretending these were rational thoughts).  I continually wonder just how much he will see.  He's two- he can't really tell me what he can see, how much he can see, how clearly he can see, and I'm pretty sure that the tests the docs do in the office are not detailed enough for my paranoid mind. 

But, then, I knew.

While patched (with glasses) Tommy picked up a crumb from his highchair tray.  A toast crumb, a little, tiny crumb!  He picked it up and said "What's Dat?"  (Which is favorite phrase right now)  OK, and so at this point I also have to admit it was lunch-time and the crumb was leftover from breakfast, but the point is, HE CAN SEE!

This is a "reenactment" that I made him pose for (after I cleaned up his tray)

He can see out of "the eye".  This eye that has consumed so much of my worry, so much of my thoughts of him.  It works!  Sure, we still have the patching and the bifocals and the 'life is not fair for me' to deal with (or at least, I am anticipating the life is not fair part).  But, it works, IT WORKS!

The "eggs" portion has nothing to do with the eye- but has everything to do with making me smile.  We went to an Easter Egg hunt in town, where you could hunt for 10 eggs, then trade them in for a prize.  Tommy LOVED hunting for eggs- he didn't even care to look in them- just loved collecting them.  But, the poor little guy threw a serious screaming tantrum when we had to turn them in.  Since he is kid #4, this is funny stuff.  Embarrassing, sure, but since he had the patch on, I'm pretty sure people just looked the other way!

Egg hunting is serious business!

On Easter Sunday (the next day) we had an egg hunt at home... Again, didn't care to look in them (these had candy!) just loved collecting them.

Ramblings of a delinquent imom

Phew- what a break!  We've had a crazy few months at our house, none of it relating to the eye... or even Tommy for that matter, so I will not bore you with details.

I often am jealous of my fellow imom bloggers- everyone has such an amazing way with words, I am continually impressed with all of them (you!).  I admit, sometimes that holds me back from writing any more on our journey.  I bring this up now, because everyone else has seemed to have had at least one "awesome encounter" with some person who was touched, in some way, by a cataract or patching.  I have one, but be fore-warned, it isn't eloquent or beautifully written!   My husband was pushing Tommy in a stroller at Disney World and ran into someone who came up to him to tell him, "good job with patching, keep it up, my parents didn't and now that eye is all messed up".  Really, that is all I know.  When he told me (hours later) I asked "what did he look like", "what was wrong with his eye", "how old was he?", "did he seem happy, successful, normal?"  And, as you all may guess, each answer was "I don't know!" So for this one, I blame it on the fact that the story occurred between two men, and no details were to be had.  Disappointing, I know, but it is the closest encounter I have had!  Regardless, he was sorry he wasn't patched more.  Rock on imoms who struggle through patching!  They may never fully appreciate it, but they will blame you if you don't!!!
 Imoms- if you will, please share your encounters (or link to the post) in the comments, I'd like to remember them all!

For the most part, Tommy's eye has just been on a steady road.  We are on a relatively easy patch road (much more economical than before!) and are struggling with keeping glasses on (insert mom-guilt here).  Every once in a while I get a sucker-punch from someone who calls attention to the patch in a way that just hits the wrong chord.  The other day it was a little boy in the church nursery.  He was only ~3, so I know it wasn't intentional, but when he shouted "Hey, what's wrong with his eye!?"  it hit me.  Hard.  Tommy will have to deal with that the rest of his life.... or at least until age 9, then who knows?




 

The boy can pose like no other...