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...