Thursday, October 6, 2011

Christmas is right around the corner...

...and what better gift to give than a 2011-2012 calendar by the Children's Eye Foundation.  Jack and several of his Little Ambassador "friends" (the moms are all online friends now) are featured at the bottom of each month.  While he's not an official picture in the calendar, all proceeds go to this wonderful organization!  Check it out: Children's Eye Foundation calendar.




















Don't forget to check out the bottom of May! :)

Tuesday, September 6, 2011

What a difference a day makes...

On September 6, 2010.../
On September 7, 2010

...life with an infant was starting to settle down./
...I found out my 10 week old had cataracts.

...I bought baby sunglasses because I thought they were cute./
...I had to order prescription glasses for my baby.

...We thought it was so cute that Jack always wanted to look at the lights./
...We learned that was because lights were all he could see.

...We were packing for Florida./
...We unpacked the Florida bag, and repacked for two overnight hospital stays.

...We had yet to venture into DC with our new baby./
...Our first trip to DC with him was to visit Children's Hospital.

...Someone sneezing in the same room as Jack had me running for the door./
...I don't think I noticed another human being.

...Jack wore his Virginia Tech gear as we all prepared to head to Fed Ex Field./
...Jack wore his Virginia Tech gear on his way home from the hospital after his second surgery.

...I couldn't watch anyone put contacts in./
...I became the person putting contacts in Jack's eyes on a daily basis.

...I had freakishly small hands./
...I had perfectly sized hands for inserting contacts into an infant.

...Jaundice was the worst thing in the world./
...Cataracts made jaundice look like a cold.

...Aphakic sounded like something you said when someone sneezed./
...Aphakic described my son's condition.

...I had never seen a baby wearing glasses./
...I was fending off questions and stares about my baby's glasses.

...I didn't really have a reason to write a blog./
...I was able to share Jack's story with others facing the same thing.

...I didn't know anyone who's child had cataracts, or even eye issues./
...I have made lots of friends, either cyber or "real life," that I never would have met before.

...I'd never heard of the Children's Eye Foundation./
...Jack is a Little Ambassador and I'm so proud to be a part of their mission.

Life changed.  Not for the better, not for the worse.  What we saw as normal just became defined a little differently.  At the end of the day, Jack is an extremely healthy and happy baby.  We wouldn't change a thing about him and if this is the path we were meant to take, so be it. 

So, while I approached this anniversary with a lot of sadness and a heavy heart, writing this has made me realize that our lives have been opened to a world that we never knew about.  I remember writing early on in the "Journey" that although we knew it could be much worse, we weren't ready to accept that. 

I think we are ready to accept that while the hand we were dealt was a difficult one, God wouldn't give us what we couldn't handle.  On to another year of health and happiness!

Saturday, August 13, 2011

Eureka!

In the heat of the moment, glasses are SOOOOOOOOO much easier than contacts.  You can slip them right on, and it doesn't involve two people and flailing limbs.  However, Jack is so much more comfortable in his new contacts (FlexLens).  When he gets frustrated, the glasses are the first things to go.  He pulled them off 4 times in the car today, and we only went about 15 miles. 

Because of this, we're trying to be more consistent with his lenses.  Today was the 4th day in a row we put them in, and he does get better every day.  David was even able to get them out while I was holding him - he kept his eye open the entire time!  Putting them in is still a struggle, but someone on the APHAKIC Yahoo board suggested putting a sticker on your nose, so today at Target, I got a huge pack of stickers in the dollar bin and stuck one on my nose.  Wouldn't you know, it gave Jack something to look at and when we were done, it stopped the tears right away to see mommy with a sticker on her nose!  I had to leave it on for about 20 more minutes because hey, it made him happy!

So here it is, goofiness and all!  It breaks my heart every time we have to pin him down and slide those contacts over the tears, but if this helps and eases his pain (not physical pain, obviously!), it eases mine as well!  Keep the tips coming! I still don't understand the people that can put the contacts in using the high chair, but maybe we'll get there someday...

Wednesday, August 3, 2011

It's been awhile...

There hasn't been much to report, so I haven't been keeping up with the blog, but it seems everyday someone new finds out their son or daughter has been born with cataracts, so I want to do better.  If you are visiting for the first time, please make sure to visit the earliest posts. 

We celebrated Jack's first birthday about a month and a half ago.  Miraculously, we actually had 2 contacts that were the correct prescription to put in for his big day.  I feel like we've either lost one, or got the wrong prescription.  Needless to say, we haven't been terribly consistent.

Here's the birthday boy enjoying his cake:

Jack also got new glasses in May since he had outgrown the other ones.  They are still Miraflex frames, just a little bigger and a different shade of blue.






He aced his one year eye exam at the pediatric opthamologist, so we don't go back until October (although we have yet to make it to a scheduled appointment without squeezing in an "emergency" visit in between.)  After he got his new glasses, we were concerned that his eyes were crossing, but the doctor said we didn't need to worry until he spent more of his day crossed than not crossed, and these were very isolated incidents. 

Other than that, life with a one year old goes on!  Jack's first word was cat...go figure. He loves Rocky.

No official walking yet, but he stumbles here and there.  He's such a swift crawler, I don't think he's in a hurry (and neither are we!)

Hard to believe it's almost been a year since we learned about Jack's cataracts.  I never thought we'd overcome that grief, but like I said, life goes on!  He hasn't skipped a beat and is developing right on par.  We couldn't be happier with our little guy!

Saturday, May 21, 2011

The End of the World? Almost.

I've noticed a theme among my recent blog entries: a bottle of wine to alleviate whatever stressful event related to cataracts there was that day, and a lost contact.  Well, fear not, I write this with the glass of wine in my hand but tonight the issue is not a lost contact.  It's lost GLASSES.

Yes, you read that right.  Jack managed to lose his only pair of glasses in the middle of busy Reston Town Center in the middle of their Fine Arts festival, which meant there were probably a couple thousand people walking around.  He was sitting in the stroller and as soon as we noticed they were gone, I retraced my steps as best I could, asking outdoor seating hosts at all the restaurants if anyone had seen little blue glasses.  By the time David caught up to me, Jack was hysterical because well, he couldn't see, and I was hysterical because he LOST HIS GLASSES. 

We flagged down some Fine Arts people on a golf cart who whisked off to see what they could do.  David went back and retraced our steps and I tried to entertain a somewhat blind baby.  After about 20 minutes (it could have been days), David called and told me to meet him at the Lost and Found near the ice skating rink.  He had run into a security guard who used the walkie talkie to page all of the Fine Arts people and all of the security guards to see if anyone had found them and he couldn't believe it when he heard, "I've got them" over the radio. 

The next thing I see is David walking towards us holding the glasses.  I was hysterical at this point.  People were stopping to ask if we were okay because they thought we had lost a child.  Close enough, people, close enough. 

We start to walk back to the car and 2 ladies at an outside bar stopped us and said, "Oh good, you found them.  We turned those in awhile ago."  You bet we hugged those ladies until it hurt.  They told us they had seen Jack earlier and commented on how cute he looked in his glasses, so when they found them on the ground, they figured they had to be important and turned them in. 

So, yes, our world really did end around 6pm tonight for a half hour or so, but praise God that there are angels wandering around out there.  I hope those angels enjoy their night at Jackson's. ;-)

I also realize that "wine" is going to start showing up in my traffic sources for how people find this blog, so for those of you that are wondering, tonight we are enjoying Sweet Mountain Laurel from one of our favorite wineries, Chateau Morrisette. 

Sunday, May 1, 2011

Frustrations.

I'm so glad that I've been able to "meet" some new friends in similar circumstances because of this blog.  I'm sorry that anyone in the world has to go through what we've been going through, but it is nice to know that the real purpose of this blog is being served.  That being said, a note to my new friends - don't read this.  No, I'm just kidding.  Just let me note that for the most part, things have been pretty settled and calm.  We've hit our little bumps in the road, but all in all, we're hanging in there!

Jack developed some kind of irritation with his old contacts, so he was in the glasses for awhile while we waited (and waited and waited) for a new type of contact lens to come in.  On the bright side, these ones are MUCH cheaper, but they are daily wear which means...yep, they come in and out
every.
single.
day.  

We'd given them a shot on the weekends, and then while we were all  home for Spring Break, we did them every day and by the end, the three of us had gotten it down to a science.  When Jack went back to daycare, however, we decided to send him in the glasses again because they preferred them.  It's much easier to tell if Jack is wearing his glasses than it is to tell if the contacts are still in.

Well, fast forward to Monday afternoon, when I picked up Jack...he had been taking his glasses off all day!  He's not just moving them up and down like before.  He's now completely pulling them off of his head (and throwing them down the side of his car seat while we're in the car!)  We decided to try the contacts the next day since we had gotten so good at it.

Disaster.  He rubbed his eyes the entire way to daycare, but by some act of God, they were both still there when we arrived.  Then I get a call from daycare around 2pm saying that they thought one of the contacts was folded and his right eye had been crossing all day.  One of the many downsides to a teaching job is that I cannot get up and leave, so I got there as soon as I could (which wasn't until 4.)  Both contacts were in and he seemed just fine, so that was a relief.

Well, wouldn't you know my little Jack rubbed his eyes all the way home and when we pulled into the parking lot, it was gone.  GONE!  He made it all day and lost it on the 5 minute drive home.  Frustrating.  Well, now we had a missing contact, one contact still in, and a contact-less eye going severely crossed.  David had a work event, so it was me vs. the other contact (and attempting to find the lost one), not to mention the incredibly whiny 10 month old who hadn't napped and was hungry.  After several attempts and some yogurt melts as bribery, I somehow (SOMEHOW) got the other contact out by myself. 

So now I am left with the still whiny baby who will not keep his glasses on and there is nothing I can do!  I was so frustrated.  Luckily, my wonderful husband passed on his work event to come home and take care of his family and once Jack was in bed, a bottle of wine magically appeared.  So even though things are 99.9% easier than they were, we still have our down days. 

We're off to the opthamologist on Wednesday for an unscheduled visit to check the crossing eye and hopefully get a better measure of his eye and order more contacts, because what is more fun that ordering more medically necessary items that insurance still won't cover?  We have yet to actually make it to a scheduled visit with out an emergency visit scheduled in between.  Oh well, we missed her!

Monday, March 28, 2011

Thank you to the Children's Eye Foundation!

We are so grateful to the Children's Eye Foundation for being there when we were searching and searching for information related to what we were going through.  We were so excited  to learn that Jack had been selected to be one of their "Little Ambassadors" and we were even more excited when they asked us to do a video for them.  They did a great job editing it and we hope that Jack's story will help others going through the same thing, or educate people about the importance of children's eye health. 

Now, for Jack's onscreen debut!

6 months later...

It's hard to believe that it has been 6 months since we found out about Jack's cataracts.  It feels like it has been 6 years!  Every night when I'm in bed, I think about those few weeks...how we wondered if we would have the strength to make it through everything.  If you had told me then that in 6 months, we'd be living a fairly normal life and sharing our story with others, I wouldn't have believed you.  The week between finding out and Jack's first surgery were filled with such sadness, desparation, confusion and anger.  6 months later, we feel none of that.  I am so proud of our family, and especially Jack, for making it through such a scary time.  Now, we deal with what most parents of 9 month olds are dealing with - finger foods, crawling, separation anxiety.  Of course, we have an added challenge - right now, we are in a pickle with his contact lenses.  He had a reaction to his last pair, so we're waiting for a new type to come in.  There will be extra doctor visits, and panic phone calls to the pediatric opthamologist, broken glasses, lost contacts.  But they've become part of our daily life and we wouldn't change it.

Thank you to all of those who have prayed for us, asked about us, or even just read this blog.  It has helped us heal to be able to share our story. 

Monday, February 28, 2011

Yeah, I watch 'Teen Mom.'  I can't get enough of it.  I swore I wasn't going to watch 'Teen Mom 2' but I got sucked in by Leah, who has twins.  I bawl my eyes out every week as she goes through finding out what is wrong with her daughter, Ali.  Last week, their family was featured on the cover of US Weekly and I was SO EXCITED to see her daughter wearing the same glasses that Jack has.  (Of course, his are not pink!)

Sunday, February 27, 2011

Raw emotions

Jack has been in his glasses for the past couple of weeks.  He had a lot of eye goop, which we thought was a double case of pink eye.  After a week in glasses and on antibiotics, we put the contacts back in and later that night, the goop was back.  Turns out, it's something to do with the contacts.  We go to the doctor tomorrow, so hopefully she'll shed some light on it, but he's been in glasses for about 3 weeks.

Last Wednesday, I picked up Jack from daycare.  When I walked in, he and another boy were playing and he was happy as can be.  I snuck around the corner to get his bottles, and by the time I came back around, he was crying hysterically and both caregivers in the room had rushed over to him.  Jack NEVER cries, so I tried not to be the neurotic mom and just laugh nervously.  Turns out, a little walker gal in the room had come over and pulled his glasses.  I guess they kind of snapped back in his face, causing his outburst.  If you were in the room, you probably could have heard my heart break on the spot.  I know she's young and was just curious, but I felt like it was a direct hit on my poor little baby. 

Then today, we went out on our regular errands.  Sometimes, I am brave and dare people to give my son a second look.  Today, I was not in the mood.  I watched everyone walk by and whisper to someone with them about the glasses, or stare a second too long.  The worst was a conversation with a store employee:

Him:  Those aren't real glasses, are they?
Me: Yes, I wouldn't have them on him if they weren't.
Him: No way! I was going to ask you where you got them so I could get a pair for my son.

Really? REALLY?  You have got to be kidding me.  This was a completely innocent comment, but come on.  If you're going to say something completely ridiculous, keep.your.mouth.shut.

As much as I try to pretend nothing bothers me anymore, or accept everyone's comments that he's "just too cute in the glasses," this is still all part of the journey.

Tuesday, February 15, 2011

The Red Eye Reflex

To most people, red eye is an annoyance that ruins the occasional picture.  Luckily, most cameras and photo software are armed and ready with things to avoid it.  However, to a parent with a child with cataracts, it is a wonderful thing.  You see, when your child has red eye, it means that he or she does not have cataracts.  Red eye happens when light travels inside the eye, hits the retina and is reflected back.  When there is a cataract on the lens, it doesn't let the light reflect.  That's how our pediatrician found the cataracts.  (Disclaimer: if your child doesn't have red eye in their pictures, chances are it is probably not cataracts.  You probably have a really good camera!) 

Looking back at Jack's earlier pictures and knowing what we know now has been a very educational experience, and we wanted to share it with those going through the same thing or those that are unfamiliar.

August 3, 2010 -Jack was 6 weeks old.  He has red eye in both eyes, which means the cataracts either weren't present yet, or were not very opacified.


September 5, 2010 -  the day of Jack's baptism.  This was 2 days before we knew about the cataracts, but you can see that he only has red eye in the right eye.  That means that the left cataract had opacified enough to block the reflection.

 This picture was taken right before Jack's first surgery.  He doesn't have red eye in this picture, but you can actually see the cataract in the left eye.
 This picture was taken in the hospital the day after his first surgery.  He still has a slight red eye in the right eye, which means that the right cataract had not opacified yet. 


 September 25, 2010 - In between the surgeries.  At this point, he has MAJOR red eye in the left eye because the cataract had been removed, but the red eye is now gone in the right eye because the right cataract was starting to opacify.















Halloween 2010 - VICTORY! Both cataracts gone. Double red eyes are a good thing!









Saturday, January 29, 2011

Peek a Boo Jack


Not many kids can play Peek a Boo like this! :)

Sunday, January 23, 2011

The 9 lives of the contact lenses

A quick update on Jack, as it's been awhile since my last post.  He's doing GREAT.  He loves daycare and I am eating crow and admitting that I'm actually enjoying being back at work.  The drive to pick him up after work is so exciting and I just love the little smile he gives me when he sees me.  Speaking of "seeing" me, his vision is great.  The contact lenses or glasses seem to give him a leg up and he's grabbing at things as small as the horse on David's polo shirt and my necklace. 

So on to the contact lenses, the bane of my existence.  We should have known that those bad boys were going to be a pain in the ass when it went missing the first time the doctor put them in.  Lost contacts have been found in his eye, in the bouncy chair, on the floor at daycare, laying in the crib, sitting on his cheek...
I am starting to believe that we have used up our "9 lives of contact lenses" since we have lost 2 in the past 2 weeks. siiiiiiiiiiiiiiiiiiiiiiiiigh. So why am I writing this instead of looking for the contact lens?  We've looked on our hands and knees with flashlights for the last 2 hours.  We have found a lot of stuff, including a sofa cushion that needs to be vacuumed and a pacifier clip we lost months ago.  We also learned that there are bits of Rocky on every square inch of this house.  Some things are better left unexplored!

I know everyone knows how much the contacts cost.  I feel like the dad in Father of the Bride who tells everyone how much his daughter's wedding is costing him.  Here's the best part - insurance won't cover them and have now denied our appeal. 

So here's the hard part.  Why are we doing this to ourselves?  The glasses fit much better than they used to and he doesn't seem to mess with them as much.  You can tell when glasses go missing.  You don't have to pin him down to get the glasses on and off.  They don't cost $150 every time half of them goes missing.  I know everyone seems to think he's "so adorable" in the glasses, and I'll admit it - the kid can pull them off.  It's just not the same.  We want to give him every opportunity to live his life like he didn't have major eye surgery at 3 months of age.  Anyone reading this with any advice, please feel free to share.  We've got a long way to go!