As if patching weren't enough.

We took a mini-vacation to a water-park last weekend.  Tommy's dad ran a marathon, so we tacked on a family vacation to it.  Overall it was tons of fun.  It is always great to have a few days off of work, cooking, laundry, and cleaning.  BUT... there is always a but, right?   Just before leaving, someone posted a question about baby goggles on an aphakic web page.  Baby goggles?  Yes, apparently in addition to worrying about LOSING a contact, I also had to worry about it getting infected with nasty pool-germs.  What?  Ok, so I know pools are gross, but as the mother of 4, I've gotten over a lot of my squeamish tendencies.  I fully believe in the 3-second rule, and I've looked the other way when I see Tommy chewing on one of his own shoes.  I can let myself forget all the 20/20 shows with the blacklights and sit on the bed in the hotel room, and although I know pools are gross, kids love water parks, and the germs never hurt anyone with a fully functional immune system.
But... when it comes to Tommy's eyes, I tend to be a little over-the-top wimpy.  According to moms on the website, the Silsoft contact he wears can absorb germs.  So any water that gets in his eye could be dangerous.  Of course, I read this at 8pm the night before we leave so there is no way I can call his ophthalmologist, so I have to believe in this.  Yuck, ugh, mini "woe is me" melt-down.  Now what?  Does he have to sit out and lose out on any fun?  Should I worry more when I give him a bath?
It all worked out fine, Tommy isn't old enough to do any slides, so I patched in the morning with contact in and basically held him while I watched his sisters have fun.  (My arms were TIRED!)  Each afternoon, I'd take the contact out and he could go in the kiddie-pool for a little bit and splash away at his heart's content.  I know, it wasn't a big deal, but it isn't FAIR!  I know, there are so many other worse things.  He is a healthy little boy and is making great progress.  But I was jealous.  Jealous of all those little babies splashing away in the pool without a care in the world.  And yes, he was one of them for a little bit each day, but for 6 hours, he was stuck watching with his patch on.  People were generally gracious about his patch- although I did want to get business cards printed up with his story so I wouldn't have to repeat myself... or listen when people thought he had a lazy-eye and shared story after story with me about themselves, their son/daughter/cousin/friend/etc.  I did patiently explain (when asked) or nod (when they assumed) but it was tiring.  If I'm this tired of what I have to deal with, I can't imagine how tired he must be of having to wear that itchy, hot, sticky patch each day.

Alphabet Soup

I haven't posted in a while... first, there isn't much going on that is new with Tommy's eyes.  That is good news, for sure!  But there is another reason.  I WANT to write a post on PHPV or PFV (whatever you want to call it).  But I can't.  I can't face it.  I know what it is, I know what it means, I know Tommy has it. What I can't do is face what it means.  Writing about it will make it more real.  I'll have to confront everything I have been pushing out of my mind.

So forgive me for my lack of posting, I'll get there.  Until then... enjoy this cute little face!

Day Off

Tommy lost his contact... again.  Lost it for good this time.  I don't know where or how.   He's been fussy lately (teething boy)- and I would have thought it would've popped out during one of his fits... nope.  I thought it might pop out when I made him cry (shriek) himself to sleep.  Nope.  I think it happened while his sisters were having breakfast while he was happily playing on the floor... the floor that was so nicely vacuumed later that day.  It wasn't in any of his normal spots, not in his carseat, and not at his daycare provider's house.  Gone.
Oddly, I was less frantic about this than I have been the other zillion times it has been lost.  I called the clinic to order a new one, we'll see if insurance pays.
Regardless, Tommy has enjoyed a patch-free, contact-free day!  No fits today, I guess we all need a day off now and then.

Family Business

I'm afraid our other 3 kids are too worried about Tommy and his contacts and patch.  I don't mean that they are worried about his future or are all doom and gloom.  They worry about the day-to-day stuff.  If they notice his patch is off, their first reaction is "Mommy!  Tommy's patch is off!" in near panic- even if it is the evening.  They worry about his contact and whether it is in or not.  My oldest was born a worrier- but she is constantly gazing into his eyes to make sure she sees it.  It is difficult to see, so she regularly sounds the alarm "I CAN'T SEE HIS CONTACT!"
It struck me most when Tommy rubbed his contact out last Friday on the drive home and it was sitting on his cheek.  My 4-year old was in the car yelling that Tommy lost his contact!  At first, I just thought she was trying to get in on the panic action.  Her 6-year old sister peers over the back seat and said "It's true, he lost his contact!"  Lo and Behold, the contact was sitting on his cheek, plain as day (and thankfully safe!)
While I am happy to have help in keeping track of all of this, other times I worry that they are too worried about non-kid stuff.  No 9 year old should have to worry about her brother's patching time.  (Although, if I am honest, she'd find something else to worry about if it wasn't that!)  No 4-year old or 6-year old should watch out for her brother's contact.
I guess that's just one more reason my girls will be spending time on a therapist's couch someday....

Telling our story

Tommy is now 5 1/2 months old.  His cataract is such a small part of who he is, that I don't even think about it on a daily basis.  Sure, I think about his contact (whether it is there or not) and his patch (and how much he hates it), but all that is just part of our routine... much like brushing teeth or getting dressed.  While I don't exactly forget that he has a patch, I don't often remember that it is strange for a baby to be wearing one!  So, it has started to surprise me when someone asks about it.  
I've had to explain the story quite a bit lately, as my husband gave a testimony in church a few weeks ago about small groups.  He told Tommy's story- it relates to small groups as our small group was an amazing source of support for us. 
Now a lot of people in our church (in our relatively small town) see us around town and ask about Tommy.  It is very difficult to explain the patch.  People think we patch the "bad eye" to protect it, or we previously patched the "bad eye" after surgery.  They are often surprised that we patch the "good eye" to make the "bad eye" stronger. 

Strangers are a different story.  I think I have it down pretty well, I usually tell them that he had a cataract at birth, similar to the cataract you get when you are older.  I also tell them that it is different, because 1) it is rare and 2) since a baby learns to see after birth, the cataract is a much bigger deal and we are working to correct his vision.  I tell them that he wears a contact, and laugh about how much it costs ($250 EACH, not for a year's worth!) I explain that we patch the "good eye" to make the cataract eye get strong.  Those who are interested will ask follow up questions, those who are bored will glaze over and be glad when I am done talking.  Interestingly enough, I have never had a negative experience with all of this.  I've caught people staring, which I completely understand, I tell them the story (whether they asked or not!) and it is fine.  We certainly have had quite a few kids ask us what happened, and I modify my above speech just a bit.  But really, no one has been malicious.  I've had a few "poor baby" or "isn't that terrible?" comments- and I agree with them, it is terrible that he had to go through this and will deal with a lot growing up with this.  But I also feel very thankful that he is otherwise a healthy, happy little baby.