My son, Easton was born with a severely cloudy Cataract in his left eye.  At 3 weeks old he had surgery to remove the Cataract and his Lens.  It was after the surgery that we then discovered the Cataract was just a symptom of his overall abnormal eye.  He was diagnosed with Persistent Fetal Vasculature.  Along with abnormal eye structures and a cataract, his eye also is at very high risk of reoccurring Glaucoma for the rest of his life.  In order to maintain function and attempt to restore vision in his eye,  he has been wearing a contact lens since healing from the surgery and wears a patch over his “good” eye approximately half of his wake time, 6 hours.  He is currently 15 months old and it most definitely has been quite a journey getting to this point.  We recently found out that his Glaucoma has flared up and are in the middle of a battle with it right now.  Reading the blogs of other parents in similar situations is so comforting to me.  As a result I began blogging our journey approximately 6 months ago and it has helped immensely just to get it all out.  As this New Year begins I wanted to share one of my most popular posts as a way of reaching out and giving back to a community who has given so much to me.

This post was actually written Sunday, October 16, 2011… but it still rings true for me everyday.

Dear Easton…

My baby
My boy
I love you
so much
beyond what words
can express.

You are fearless.
You are full.
You are endless.
You are endearing.

You can do this.
There are so many days
when you make it
look easy.

But I know
you know
that there is a
harsh
cold
reality
to the days
that arn’t easy.

Every morning
Every moment
starts
and ends
with
the eye.

The eye
that can see
that is covered up
that wears a sticker
that bends your eyelashes down
that irritates
that itches
that rips your skin when removed,
that eye
is precious.

The eye
that can’t see
that is pulled open
that is poked
that is rubbed
that is wearing a contact
that is learning
that is growing,
that eye
is seeing.

I am sorry.
I am so sorry.
That you have to
endure.

I am sorry.
I am so sorry.
That nothing about this
is easy.

I am sorry.
I am so sorry.
That your vision
comes with a price.

But Baby.
My sweet
loving
lauging
little boy,
Mommy loves
you.

I love you
so much
that I will do this
for you.

I will continue
to wake up
everyday
and do this
for you.

Balance
Strength
Endurance

Easton,
Mommy is doing
the best she can.
I am trying.
I am sorry, baby.
I love you.

And when we have
bad days
you have to know this,
I do this
because
I love you.

Someday
we will look back
and I pray
all this is worth it.
Because you deserve
a chance
at the very least
you deserve
a chance
to have the best
possible
vision.

I love you.
I am so proud
of you.
Keep seeing the distance baby.
See the Distance.

This is my first time writing anything about my cataracts….  I’m now 41, but I was born with a cataract only in my left eye.  My right eye is still 20/20 (God is fair) and as much as I’ve joked to my doctors that they should use me in their thesis, no one takes me seriously.  For one, I know the difference between being legally blind vs 20/20 and I can EXPLAIN to the adult world the cons and pros.  So for those who are in need of some sanity for their child, read on.

A cataract is exactly like seeing objects underwater in a swimming pool.  You see the object and can identity but it’s not crystal clear. I also had a lazy eye – that comes with the territory with most cataract cases in early childhood due to the lack of muscle usage. I’ve had a semi-successful surgery only because I waited too long.  The procedure was not as advanced as it is today to fix the lazy eye syndrome related to cataract, but still I’m so grateful and happy for the surgery.  The early years, I had to wear the “pirate” black eye piece to school which I endured great ridicule from the students and from which I still have nostalgic scars, BUT my strong parental influence and my brother being next to me had made all the difference in the world.  Although in hindsight I would tell a “story” behind the patch, such as “my eye needs rest because I have extra vision like superman”….Something to that line to ease the ridicule…comedy is the best remedy. Encouragement and making sure the eye patch is “fashionable” due to the fact no one else has it makes it special!!  Having a degree in fashion has definitely made me realize that being different is the key!  It’s the love, support and encouragement the family shows that sketches out the future of the child.  My mother still carries the guilt as though she had done terribly wrong during pregnancy but I always tell her I’m blessed as I have a 20/20 vision on my right eye versus the astigmatism my brother has on both eyes.

I underwent a retinal detachment surgery 3 years ago, I went in for a normal checkup and went into the emergency room that night.  The damage was severe but the surgery was very successful. I did lose some sense of depth perception and some peripheral vision but my eyesight improved by one line on the chart which the doctor couldn’t explain.  No one had ever educated or warned me about the retinal detachment that are prone to happen to people with cataracts, so I would advise any parent to always remember to ask during checkup as their child gets older.  I did see flashes during the night while driving and spider web like floating around but thought it was just due to aging.  Don’t be alarmed as I still have a tiny “floater” after the surgery but I received results from two specialized doctors and they said it was fine.

The recovery, was tedious, boring and restless!  One must sleep facing down ( two weeks for me ) my mom and I’ve tried everything until we came up with a solution.  Bought a massage table with the open headrest from Costco and placed a huge mirror under me angled towards the TV so I could at least be entertained and now there’s iPads. The recovery is very important as one can lose their vision if not properly taken care. It is imperative after this surgery to always have a doctor’s visit at least once a year if not twice just to be safe.

I believe in Dr. Cogen because he doesn’t sugar coat things & uses lots of analogies. I believe that some of the patches smell weird & I cannot figure out why. It’s usually the green ones, but I like that color because they remind me of garbage trucks. I believe that some people probably think I talk about The Eye too much. Those people must not be moms. I believe that most people are shocked by a 1 year old wearing an eye patch, which is why they stare at us. I forget about it & usually think people are staring because I have dressed him very cute that day, or maybe he is waving at them & they are impressed with his adorable personality. I really do believe this. I believe God knew I was going to have to quit my job to patch my kid & had my mom move here to prevent that. I believe that his glasses are a magnet for dirt, smudges and scratches. “Scratchproof” -ha! I believe that we should get the senior discount at Kroger on Wednesdays because Anderson has a cataract & bifocals. Technically, he qualifies. I believe that nobody who works at Disney has a kid in glasses because if they did there would be more than one character with glasses. And, Little Einsteins is so awful, nobody watches it, so it doesn’t even count. AND, can we please get Jake & the Pirates and Jack Sparrow an eye patch? Really, is it that hard? They’re pirates! I believe in miracles, but the eye success will not be a miracle. No, no, no. It will be a hard won battle. I believe that Anderson is going to be so flexible, adaptable & empathetic in life. I believe that is not a coincidence that my son’s glasses are round, just like like Harry Potter’s. It would have been so easy for JK Rowling to make Harry have perfect vision, but she realized that true heroes always have a weakness, which makes them just a bit stronger. I will forever love her for not taking the normal path & giving the smart one (Hermione) or the nerdy one (Neville) glasses. I believe that this patching business is a routine on the best of days & an inconvenience on the worst of days & never, ever a tragedy, despite my frustrations. I believe so, so much in his little face with the one eye looking back at me.

I have a friend who runs marathons. She trains by completing 5, 10 or even 15 miles a day. While I have complete respect & admiration for her, I also know that my “training” blows hers out of the water.  See, I have to keep an eye patch on a toddler. For 10 hours a day. A toddler. An eye patch. 10 hours. Sure makes a 15 mile run seem like sitting on the couch. But, I am here to tell you while there is no t-shirt & medal at the finish line, what seems impossible is actually…possible!

Our condensed story: At 8 months old my son saw an optometrist through the infanstsee program, which provides free visits for 6-12 months olds (www.infantsee.org).  My aunt told me about it and since it was a free visit, we decided to go. Much to our shock (worry, anxiety, tears), he was diagnosed with a pediatric cataract! At 11 months, he started wearing an eye patch (2 hours a day). At 12 months his patch time was increased to 4 hours a day. At 13 months, we were at 6 hours. At 14 months he had cataract removal surgery & the patch time increased to 10 hours! With the addition of glasses at 15 months, it is safe to say the last 6 months have been a whirlwind. And by “whirlwind” I obviously mean “I am desperate for normal to return!”

Anderson after his surgery.

If your toddler is starting patching, be prepared. It’s hard.  I am saying this not to scare you but to make you realize you are not alone. While we have only been patching 6 months, we have definitely figured out some ways that make our lives much more routine. I will not say “easier” because no variation of the word, “easy” should ever be included in the same thought with “eye patch”.  Unless it is something like, “It is easy for me to hate the eye patch.”

When we first started patching, I was desperate for information. My son is my first baby & just when I started to get the hang of the whole mommy thing, BAM-an eye patch, glasses & surgery. What on earth? My frantic attempts at scouring the internet led me to discover that there is not a lot of info on toddlers and eye patches. Most of what I could find dealt with older kids & included words like reason, explain, bribe and charts. Since my son couldn’t even walk yet I knew I was dealing with a slightly different clientele. But, after much trial & error (and 6 months) we have made it routine, which is far from perfect but better than survival mode!

GETTING the patch on

Start with the right equipment:

• PATCHES: We tried Nexcare & Opticlude before my sister discovered krafty patches which quickly took over as our favorites. Because you are going to go through A LOT of them, it’s best to just order in bulk. What I love about these patches is they come in a variety of colors, they don’t irritate his skin as much as the others, they stay on pretty well & they can actually be reused if you can get it before your kid crumbles it up. Depending on the size of your kid’s face, you might have to trim the inside a bit.
• GLASSES: We use Miraflex glasses, which are 1 piece of malleable plastic. Perfect, perfect for a toddler. My son is fearless, active, a climber and into everything! I cannot imagine how many pairs of glasses or trips to the eye doctor we would have made by now if he didn’t have plastic frames. Numerous times a day (especially in the car), he will take them off and they don’t break at all because they are plastic!
• OTHER: Use Milk of Magnesia to create a barrier between the skin & the patch. We keep some in a travel size bottle because I made a mess every time I tried to dip the Qtip in the real bottle. Also, stock up on some kind of lens cleaner. Wal-Mart, Sams, etc. sells lens cleaner wipes for very cheap & we keep those stashed everywhere. Toddlers are sticky, dirty and touchy. The lenses will be so gross despite your best efforts. Anytime he takes them off, I clean them very quickly & then put them right back on. I try to keep them clean because he already is at a disadvantage with only having access to one eye!

The key to patch success is getting on the patch on while he is still disoriented in the morning. Don’t turn on any lights, TV, etc. until it is on. Give him his bottle/sippy cup & put a little milk of magnesia around the eye, let it dry for a few seconds & put the patch on! It has to be on before he is awake so he is used to it. Also, because young toddlers don’t understand, “close your eyes” yet, if his eye is open you will hear eyelashes all day as he blinks.

KEEPING the patch on

• So, once it’s on you only have 9 hours and 59 minutes to keep it on! This sounds like a nightmare & it will be at first. The key to keeping it on is thinking one step past normal toddler. All toddlers are active, independent & stubborn. As it is, you have to choose your battles so an eye patch definitely increases the intensity. Remind yourself that this is not a battle you can choose. You have to fight it. There is no option. So, you have to figure out how to make it happen! The key is A LOT of distraction. Whatever they are interested in, have it ready. Sing songs, look for trucks, read books….There is NO time away from your kid for awhile. The first few months my son was either holding my hand or sitting in my lap. He loves the vacuum so we just vacuumed a couple of times a day. You have to keep them distracted to they don’t remember it’s there! It will not be easy. Deal with it. Sounds harsh, but once you give in it will be easy to give in next time.

Anderson wearing his first patch!

• When it is time for it to come off (naptime, bath time), try to teach him that only Mommy or Daddy can remove it. He will still try to remove it, but it does help.  Always take it off from the inside to the outside because the outside skin is less sensitive.
• Don’t call it “patch”! It will consume your conversation with everyone you know and every time he hears that word, his little hand will shoot straight up to pull at it. We call our son’s patch the “cougar”. I have no idea why but it works. Once he figures that one out, we will switch to a new word.

I read a suggestion to keep water wings on him to prevent his arms from being able to reach his eye. They didn’t really work for us but he looked pretty cute!

STAYING sane

• This will almost push you over the edge. In the beginning, we tried filling in the patching chart to keep up with the hours but it quickly turned into a chronicle of how many times I cried that day, and I knew that was not a reliable outlet.
• Get frustrated. Get over it.  It’s unfair for your baby & for you. But, what is beyond fair, lucky even, is that you found out about the situation and are fixing it! He will react how you do, so don’t freak out when he takes it off. Take it from him and put it back on. Repeat. Repeat. Keep doing this until you win. The victory might only last 5 minutes until he removes it again, so start over. Your child’s vision is in your hands & you don’t want to explain to him one day that he can’t see because you let a 1 year old call the shots.
• Embrace it. Some people don’t make their child wear the patch in public because it is uncomfortable & prompts stares. This is where it is actually easier the younger they are because their feelings won’t get hurt. My husband has taught me that humor can cure anything. He once chronicled a detailed narrative involving an out of control parrot when asked about the patch.

• Remember, there is not much that is more challenging than keeping an eye patch on a toddler. But, you CAN do it! And, one day it will all be worth it when your kid looks at you with BOTH eyes to tell you he loves you!

I could probably make an accurate guess that most of us have heard the story in the Bible where Jesus heals the blind man. I have heard the story a million times, but for the first time ever I have wondered how the blind man’s mother must have felt.

The weekend after our son, Grant, turned 2 months old, my husband and I started noticing this rapid movement with his eyes. We had noticed earlier that he wasn’t focusing that well. Having an older child, we knew that he should already be focusing but we also knew different children develop at different rates. We assumed he was just a late focuser before this point. This weekend was much worse though, and I was worried. He was constantly moving his eyes back and forth…back and forth. On Saturday morning, my husband had to go into work and our older son slept in. I spent a substantial amount of time that morning trying to get Grant to focus in on me. No such luck. My anxiety with the situation was increasing greatly.

We had to go out of town for a wedding that evening, where we met my parents. As my dad was holding him, I decided to confide in my family our concerns. I remember my words (and how crazy I felt saying them) as if it were yesterday. “Dad, I’m afraid Grant might be blind.” You should have seen the looks I got from my family. They had to think I was nuts! They spent the rest of our evening trying to prove to me he was tracking their fingers!

I was not put at ease. Sunday night I was standing over his crib, with his eyes moving everywhere, sobbing, begging him to “look at mama.” I knew something wasn’t right.

We had his two month check up the next morning, and thankfully I convinced my husband he should probably call in to work and go with me. Our pediatrician immediately noticed something was up, and recommended our first step should be to go to an Ophthalmologist. They got us in with a Pediatric Ophthalmologist that afternoon.

I was so scared. All I could do during the three hour break between doctors was hold him. And cry. And pray.

After a quick exam, the Pediatric Ophthalmologist informed us that Grant had cataracts. I felt like I was hit by a Mack Truck. The mother of all Mack Trucks. I lost it. I couldn’t hold it together at all. I kept saying, “So he can’t SEE???” Even though I had thought it all weekend, I realized at that moment that I hadn’t really thought it. He started spitting out things about surgeries, glasses, contacts, lens implant surgeries in the future…. Everything from then on is fuzzy to me. He told us we could walk over to his optical shop and look at the glasses. When I saw the lenses, the tears started flowing again. Those terrible glasses could NOT go on my beautiful baby.

The next nine days were L-O-N-G! I couldn’t get a grasp on what we were dealing with. After all, we had a two year old who had never had a medical issue, much less a vision disorder. I hit the internet. I found a million things on just about every other eye disorder, but barely anything on congenital cataracts.

Nine days after finding out, Grant had the surgery on his right eye. Exactly one week later he had the surgery on the left eye. We have never faced anything so scary. My husband and I couldn’t stand watching them walk away with our baby. Two of the greatest feelings we have ever felt were watching them walk back down the hall with him after both of the surgeries. Especially after the second one. We knew at that point we were finished, and we were getting ready to face a new normal.

Grant after surgery #2

The very next day, well there are no words. I will let this video show you what it felt like to see this angel see for the first time. (Please excuse the strong southern accents you hear!)

We are now a month out from the second surgery. We were able to stop all of the drops except for one yesterday (Hallelujah!!!), and we are pretty use to this new normal with glasses. You want to know the funny thing? I prefer Grant with his glasses now. They really have become a part of who he is. I love them because they give him vision. And let’s just face it. I think we will all agree that there is nothing cuter than a little four eyes!

Eye drops

Sheri at Stewart Snippets posted a video of her son, Adam, who is 2 1/2 getting eye drops.  I thought it was a wonderful demonstration of how to get eye drops in to a young child’s eyes.  (Zoe has never been good at this).

~ ~ ~

Glasses cake!

Stephanie posted this link on the Little Four Eyes facebook page, it’s instructions on making a sunglasses cake from the Optical Vision Site.  Of course, it could just as easily be a glasses cake, and you could decorate the cake to match your child’s glasses.

• Questions for doctors – Stewart Snippets recently learned that her 2 year old son has lamellar cataracts.  She wrote a wonderful list of questions for her son’s doctors.  The questions are worth checking out and keeping in mind for doctor’s appointments, no matter what your child’s diagnosis.
• Red Eye Reflex – Jack’s Journey has a great post – with lots of pictures – about red eye reflex in photos, which can be a sign of cataracts (it can also be a sign of a really good camera with red eye reduction).

• Vision Therapy Video – This is a short video giving a concise explanation of vision therapy, with particularly good explanation of how visual problems can lead to difficulties with reading.  If you’re looking for a quick introduction to VT, this is a good place to start.  Via Bright Eyes News.

• Vision Testing App, iSight Test – There’s a new app available for the iPhone/iPad that allows you to assess visual acuity at home.  The app was developed by ophthalmologists and a pediatric orthoptist.  The app gives parents the ability to track their child’s visual acuity during amblyopia treatment in between  eye doctor visits.  Obviously, this app would not take the place of vision exams, but rather give parents a tool to use in between visits.  Quick note, the app uses and was created by Kay pictures, which were developed in part by Hazel Kay, author of Hoppity Frog has Two Clever Eyes, and a pediatric orthoptist.  Watch for a more detailed review of the app.

I came across this website when searching for tips on how to put on contact lenses for babies. My son Adyaan is 2 months old and he will have his cataracts removed on Saturday on 27 November 2010. He has been diagnosed with congenital cataracts due to rubella syndrome. After his eye surgery he would be on contact lenses of the highest power. As his parents we are indeed very scared of fixing his contact lenses for daily use. We are assuming we have to put eye drops in his eyes every day. We are scared of thinking that he will scream and cry and try to rip it off when you will not have any option but to be cruel with him and fix his contact lenses.

We don’t know how he would coup up with the contact lenses. His doctor prefers if possible Adyaan should be on contact lenses, either daily wear or extended wear, through out his life. Has anyone been through the same thing with contact lenses and found a better solution?

Any feedback or experience would be highly appreciated!

So for all you parents with babies or kids in contacts, care to leave any tips or advice?  I’d also love to hear what led you to get contacts for your kid, how easy or hard it was for your child to adjust, and how things are going now.

Thanks!

Jack was the picture of health for the first 2 months of his life.  He hit all of his milestones on time, if not early.  That’s why we were shocked to find out that he had developed congenital cataracts.  There was no history of it in either of our families, and we hadn’t even heard of it.  The pediatrician got us in with the pediatric opthamologist right away, and she quickly began to feel like part of the family.  I’ll never forget that first appointment.  I went alone with Jack thinking it was just another one of those “send ya to a specialist to cover ourselves” things by the pediatrician.  I was overwhelmed immediately when she started talking about surgeries, and glasses and eyedrops.  I felt like I had just been punched in the gut.  As Jack slept soundly in his carseat, I called my husband crying from the lobby, not able to comprehend what I had just been told.

The 10 days between finding out and his first surgery were the hardest 10 days of my life.  I felt so desperate to somehow make it go away.  I felt like it was somehow my fault, or that the surgery was going to change my little guy.  I was blessed with a strong support system and my husband and I had all of our parents there the morning we went to the hospital.  When we handed him over to the anasthesiologist, all we could do was pray that these people understood that they held our life in their hands.

He came through the surgery like a champ.  He was none too thrilled with the giant patch taped  to his head for the next 24 hours, and it took an army to make sure it didn’t come off.  My husband and I became experts at eyedrops and were so much more prepared for his second surgery 3 weeks later.  After that surgery, Jack was able to wear his glasses right away. When you saw how much better he saw, you knew that all that pain and hurt you felt the past month was worth it.

Jack in his glasses

It’s amazing what people say when they see a 3 month old wearing glasses.  I’ll admit, I would probably take a second look if I saw him as well.  What hurt the most is that people thought I was putting them on him as an accessory or to look cute.  I had no problem explaining why he had to wear the glasses.  Jack is now wearing contact lenses in both eyes.  They are a stronger prescription (-20 and -26) and keeping glasses on a 3 month old is as difficult as you would think!

Looking back over the past 6 weeks, I am amazed at how scared we were.  Coming through it, you feel like you have grown a second backbone.  We are blessed to have such a wonderful little guy like Jack who was stronger than anyone.  He still faces lots of eyedrops, prescription changes and trips to the doctor.  He’ll go back in for surgery when he is about 5 years old to receive his permanent lenses.  (In children as young as he is, they have to remove the lens to get the cataracts, but cannot give him a replacement as his vision is still changing.)We are so thankful for our doctor and that people were put on this earth with talents and gifts like she has.  We have been inducted into the stresses of parenthood rather quickly (Jack is our first), but we survived and we’re better for it!