Patch Rash

Tommy has reached the point in his therapy where he has to patch four hours per day.  He has also reached that point in his development where he can successfully pull off his patch.  He hates being patched.  At baseline, his skin is sensitive and appears to itch all the time.  The patch just adds to that.  I'm fairly certain that he can't see very well out of the "bad eye" (but I'm trying to remain optimistic that he can see something!) and the patch irritates his skin.  I don't blame him for being crabby- but it is no fun for anyone!  I haven't found that magic thing to keep him occupied while patched.  I've heard that TV, video games, movies, and bribes may work when he is older.  At 4 months old, it is just simple persistence.  I'm thankful that we have a daycare provider who genuinely loves him and wants him to see as much as we do.  She helps out a TON by keeping him patched during the weekdays, I'm certain that most daycare centers wouldn't be so vigilant.

Nonetheless, Tommy went through 3 patches today.  I even tried a super-sticky, ugly band-aid type patch.  He pulled that off as well, and was left with "patch rash" that makes him look like he has a big red circle around his eye.  I've been putting hydrocortisone on it, but the poor baby is stuck looking like this for a few days!  I need to keep reminding myself that patching is good for him and it makes his eye stronger.

Infant Aphakic Contacts vs "normal contacts"

If you look closely, you can see a bulge in his eye- that is the center of the contact!

Tommy's Contact- look at that bubble!



Daddy's contact- look how thin!



I am constantly amazed at how thick Tommy's contact in.  I can actually see a bulge in his eye- which makes it easy to spot, but must be slightly uncomfortable.  That bubble in the middle is not solution- it is his thick contact!   To put it in perspective here is Tommy's contact, a prescription of +23 dipters to his dad's prescription of -3.25 diopters.  Yes, that is a difference of 19.75 diopters!  (His dad does not have aphakia)

Found: 1 Very Expensive Contact

Wow- the contact has been found!  Our wonderful daycare provider found it today- hooray!  She found it sitting on the couch- plain as day.  We lost it Friday and she found it Monday morning after I told her about the loss.  It was a little curled up, but not the shriveled mess I expected.  She put it in the contact case with saline solution and we plan to disinfect it tonight.  Let's hope it is unscathed!

I already ordered a new one from the optometrist- if this one works, let's see if there is a way to stop the order!

Missing: 1 very expensive contact

We lost our first contact.  I don't know exactly when it happened, Tommy woke up on Saturday morning with no contact.  I don't remember exactly when I last saw it in his eye- it has become habit to look so it barely registers in my mind anymore.  I searched his car seat, his bed, each blanket he played on in the last 24 hours- no luck.  I scoured his clothes, my clothes, and the chair where I feed him in his room- no luck.  We had been out to dinner and shopping the night before- my guess is that we lost it somewhere while out. I'm so mad!  Mad at myself for not checking before we leave anywhere, mad that each contact costs $250, mad that I have no idea if our insurance will cover it or not.  I'm also mad that it happened on a Saturday- the optometrist isn't open until Monday morning, then they have to order it.  He will be without a contact for at least 5 days- 5 days where he won't be gaining strength in his bad eye.
I'm doing my best no to rant against insurance companies here.  I've done my best to figure out what our insurance will cover for contacts.  We were considering getting supplemental insurance, but wanted to wait to see if our primary insurance would cover contacts.  I called the insurance company on three different occasions- and no one could give me an answer.  A claim has to be filed before they can tell me anything.  (How backwards is that?)  So far, they appear to have paid for his initial contact and his first change in prescription.  I guess this will be the real test to decide what they will cover.

Shocking Realization

It has hit me in the past few days that Tommy is actually normal!  Now, normal is relative in our house, but nonetheless, Tommy is no longer "My Baby with a Cataract" but just Tommy, my baby.  I say this with such surprise because when we first found out about his condition, it consumed my every thought and ounce of energy.  I mourned the fact that he wasn't a normal, healthy baby.  I worried about what might happen,   I worried what people would think, I worried that he might not be able to see, I worried that he wouldn't lead a full and productive life, and yes, I worried about how his condition would impact the rest of our family.  I worried constantly about anything and everything.  I obsessed over his condition with all of my might. 
Yes, he wears contacts, he gets patched multiple times per day, and I have no idea what the future holds for him.  But really?  He is a normal, healthy 3 month old boy.  He cries, he smiles, he laughs, he plays, he screams, he sleeps.  We enjoy him fully- but not like he is a fragile sick boy. 
 This must have happened gradually, but it hit me all of a sudden.  When it hit me was yesterday at church someone asked me "what happened to his poor eye?" and it took me a minute to remember.  I was not thinking about his contact or patch or cataract!  It is a great feeling and I am ever so thankful for it!  I know he has a rough road ahead, but overall, we are pretty lucky for his addition to our family. 

Fun Eye Patches

Once I knew we were going to be patching, I set out to find patches that weren't the ugly skin-colored bandage color.  None of the stores in my area carried eye patches that weren't the black pirate type.  While searching online to order any patch, I came across quite a few cute options!

I ordered Nexcare patches online... and while they stuck really well, they left a horrible red mark on his eye and he fussed when it was time to take them off (it hurt!)  I tried using baby oil and lotion to help remove them, but that didn't help.  I tried to do the Maalox trick where you dot parts of the patch with Maalox in hopes that it won't stick to certain parts of the skin.  That was just messy.

Tommy in an Eye-Doodle patch

The first fun patches I came across were eye-doodle patches at http://eye-doodle.com/.  These are patch stickers that go over any eye patch.  They were created by a mom of a child with cataracts.  Her story is posted on the website and I just had to support her!  These are absolutely adorable patch stickers.  They came quickly and had great customer service.  These will be great when Tommy is older and can pick his own.  They are not too expensive, when added to a standard patch (I had Nexcare brand) the total cost is comparable to pre-decorated patches.

Tommy in an Ortopad patch

The next ones that I tried are from Ortopad.  http://www.ortopadusa.com/  These patches are hypoallergenic and were reported to be better for sensitive skin (which Tommy appears to have).  They  have many options- cute styles for girls and boys that are pre-decorated.  They also have a plain beige option which includes stickers that you can add.  I bought the Ortopad Elite Boys version and am very happy with them.  I had some initial user-error (you need to apply the patch then hold the patch for a few seconds to make it stick) but once I got the hang of it, I love them!  His skin never breaks down as it did with the Nexcare brand patch and they are cute.  I don't love all the designs- but I can use the Eye-Doodles over those!

Other brands that I have found, but not tried are:
http://www.myipatches.com/home.php  These patches are cute (I requested a sample) and this company lets you pick the styles of patches that you want.  They sent me a free sample, but sent a note with tips on how to make them less irritating to the skin.  Since Tommy is having enough trouble with cradle cap and baby rash, I'm waiting to try them.  They supposedly stick really well, and I have a feeling that I will need those as my little boy gets bigger!

http://funeyepatchkitsforkids.com/ These patches allow your child to decorate them with stick-ons (like jewels and foam stickers).  They also have a nice selection of cool colored patches.  Since Tommy doesn't decorate yet... I haven't tried them.  I may order some for his sisters to decorate for him, but haven't done it yet.

I have found quite a difference in how people react to a fun patch as opposed to a plain patch.  People will ask what happened to him and often give positive comments on the patch.  With a plain "flesh-colored" patch, they tend to look away.  An interesting aspect of human nature!

Since we will likely be patching for quite some time, I am so thankful that some companies have cute options available.  My favorite company is still the eye-patch stickers as I love the fact that a mom of a child with cataracts created them initially to make her daughter's experience better.