Preferred Patch Position

This is how Tommy would prefer to wear his patch.  We've had a rough patching week!  Not to mention, I added up how much we have spent on patches in these short 8 months... $190!  OUCH!

Patching... painful but worth it!

We saw the ophthalmologist a few weeks ago.  For the first time, they used the "teller cards" on Tommy.  These are cards with varying black and white lines that they use to determine visual acuity in infants.  They tested Tommy while patched and seemed pleased with the results.  They did many other checks that I have no idea about and involved a lot of head gear and lights.  Amazingly, little Tommy, who has developed a major case of stranger anxiety, cooperated beautifully!  The ophthalmologist, optometrist, and technician were all excited that he "tolerated his patch so well" and seemed to be benefiting from it greatly.  I had to laugh... while Tommy was doing just fine in the office in regards to his patch, he was already on his 2nd patch of the day and his appointment was at 8am!  I did remind them all that he hates it and we sometimes go through 8 patches per day, but they still seemed surprised that we kept up so well.  I am so thankful for our great daycare who keeps up on this painful process every day and for our family who endures his crankiness during patch time. Yes, there are days where patching is miserable and I feel sorry for Tommy and me and our whole family, that I want to give up on the whole thing!  But news like this, that Tommy's eyes are improving, makes all the stress and hassle worth it.  Our contact prescription went down again (+23 to +20) and his eye is growing.  All major strides for a baby with PFS (or PHPV).  Life is good.  I have a lot to be thankful for!

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.