Three Years Ago...

Then....

About 2 weeks after surgery at age 10 months

Now....

3.5 years old at a regular appointment

What I've learned these last 3 years:

Patching a child is difficult.
Just because I don't want to put a patch on her doesn't mean I won't.
She is more resilient than I would have ever guessed or known.
Brown drugstore patches are the worst - decorative patches are the best!
Just because she wears a patch doesn't mean everyone should feel they have a right to comment about it.
Surgery and patching were right for her.  We know she is lucky to have had surgery with no complications, and contact wear and patching with no 'real' complications.  Even still, it doesn't seem easy!
She has had the best care givers who have been able to care for her and her patching/contact needs.
When the surgeon tells parents that surgery is scary and a lot to think about, but it's after surgery that all the work happens - the surgeon is right.
If M could just magically gain vision without patching in her eye that had the cataract and subsequent surgery, I would choose to not patch her.  Patching really sucks.
Patching just becomes a part of everyday life.

The last three years of relentless patching has resulted in a vision outcome for that eye that was way beyond what we had hoped, expected, and dreamed of.  Going into surgery the surgeon had optimistically suggested that the 'best case scenario' for vision for her in that eye would be 20/50.

After surgery she started at a vision of 20/2200.  What 'we' can see at 2200 feet she would be able to see at 20 feet.

Now she's at 20/40, almost 20/30.  What 'we' can see at 30 feet she would be able to see at 20 feet.

She's passed her 'best case scenario' and she is still patching full-time, everyday all day, in hopes of some more vision changes.  Next appointment is in a few weeks!

We are so proud of her and all her hard work!

2 Years Ago

It was 2 years ago we got our little one ready for her surgery.

 And she was returned to us after surgery, seemingly content and happy.

It's hard to imagine it has been 2 years since she had surgery.  Since surgery we have been on the all day everyday patching plan.  Generally we aim to have her patch on as much as possible, everyday, and usually that means she's getting about an hour without her patch a day.  It has been 2 years of us parenting a child that wears a patch.

When a surgeon sits down with you before the surgery date is set, and he or she says to you - surgery is difficult but it's after surgery with the patching that is the hard part - they couldn't be more right.  Surgery was hard, and felt devastating at the time, but there was an end to the surgery, she was returned to us, and it was over.  Patching - it's never over.

Patching is a struggle and presence in our life everyday.  As M gets older she is starting to realize it sucks to have to wear a patch.  She realizes how much she can't see when she has to wear her patch and she has become very good at verbalizing her annoyances with it. She has come up with some masterful ways in which to convince you that you need to take her contact out and therefore have to take her patch off...  She knows all the contact and patching language, and has become quite accustomed to the 5-6 week check ups at the hospital.

She has worn her patch everywhere.  We insist she wears her patch everyday.  I find it easier to just keep her wearing her patch as much as possible, with little exceptions as possible, so she knows its a part of her life everyday all day, almost regardless of what we are doing.

She learned to crawl and walk with her patch.

She learned to drive a tractor.

Taught everyone we saw all about patches and cataracts.

Learned to play in water and swim (without losing a contact or patch!).

Went on vacations at beaches (yes that's a beach of sand - worst nightmare mixing children with contacts and sand!).

Drive crazy shopping carts with her brother.

In two years she has learned a lot and done a lot, and she has managed to do it all with a patch.  She knows she wears a patch, and she knows why, she also knows that she is the only person she knows that wears one.  She knows she looks a little different from her friends now, and she knows that when she wears her patch she can't see very much at all.  She knows she misses lots in the world around her because she can't see, but she has learned to fake it!   She knows that sand and dirt make her contact hurt her, and she has learned that getting squirted with orange in her contact eye really hurts her too.

I know that in the future she will know and understand that we did all this surgery, and subsequent patching for her, and the possibility of the best possible vision outcome in that eye.  In the end, it'll be worth it, all this hard work, all the fights and struggles, and all the times she notices she's a little different.  In the end we will be able to say we did the best we could, and she did the best she could, and we can deal with whatever comes after that.

M's Last Appointment

M turned 2!

On her birthday she had an eye appointment - what a way to celebrate!  As soon as we walked into the office she was very excitedly greeted by the receptionist with a big 'Happy Birthday'.  And in response she buried her head in my shoulder.  The whole day when someone gave her a birthday greeting she responded 'no happy birthday'.

Then when she got called in for her appointment she was again greeted with another enthusiastic birthday greeting to which she buried her head again and said 'no happy birthday'.

The 'terrible twos' hit hard this day.  She was so uncooperative at this appointment, refusing to identify any images close up or far away.  She wouldn't talk to the lady doing the check up, and couldn't even be bribed with stickers.  In the end she identified an image maybe four times, after a 30 minute struggle to get her to cooperate.  The thought is there has been improvement, the limited images she identified were from a slightly farther distance and that was with little to no cooperation.



M is still full-time patching and wearing her contact.

Her next appointment is in another 5 weeks at the end of March with her surgeon again, and hopefully she's over the 'terrible twos' by then!

Blog Neglect

I have been neglecting this space!  I attempted to write a "1 year" post, that being 1 year after M's surgery date, but it was hard to write.  I've had a partially completed post waiting to be written, and just felt I couldn't write another post if I didn't write that year post.  So for whatever reason, it's hard to write, it's hard to sum up a year of appointments, feelings, and events.  So I give up!  And I'll just move on!

M's congenital cataract surgery was November 23, 2012 and I think I may remember that date for the rest of my life.

I find it kind of sad to look back at how much we struggled just after surgery, how when we first were able to get a contact in and patch her, she was essentially blind and couldn't be put down or left alone.

I look back a year ago, and we have learned so much, dealt with so much, and persevered so much.  There have been ups and downs in the process following her surgery, but considering everything, she has been remarkably good with her patching.

M has been seeing her optometrist and surgeon every 5-6 weeks, and her next appointment is this Friday.

Eye Chart and New Contact

M had an appointment recently and she managed to identify 4 out of the 9 pictures.  She identifies the duck, tractor, house, and puppy (really a teddy bear).  This gets her onto the chart, and gives staff a baseline for her vision numbers.

At our last visit M's eye had changed shaped considerably, and there was concern it could be because of glaucoma development.  She had her eye dialated, and closely examined (she sat motionless for probably 20 minutes) with numerous lights, and tools.  Turns out her eye had physically grown, nothing as a result of glaucoma, and therefore needed a new contact.  The new contact we have is a stronger magnification at this point, and suits her eye shape at this time better than the old one had.

Since she has been wearing this new contact she has appeared more engaged with 'seeing'.  She has been colouring with her eye super close the paper, reading and looking at books up close, and looking at people closely.  They seem happy with this, she's engaging in her vision more with this new contact (like she had with the other contact months ago) and hopefully keeping her brain busy at developing better vision!

Funny Little Images

M had an appointment about 2 weeks ago at her surgeon's office, and with her optometrist.  It's taken me a while to write a post about it, well because it was just another normal appointment.  Things looks maybe better or the same, at least not worse, and keep patching full days everyday.  It's hard to remember that going and having a non-eventful appointment is good news.  Things just keep on going, and we keep patching, and hope for the best in the end of all this.  

One very exciting moment was the mention of this eye chart.  They gave me a copy of the images they use to get her 'on the chart', for a more objective way to measure her vision development. 

She's 1.5 years old, and they suggested a little young usually for being expected to identify or recognize these images, but she was so chatty and interactive at her appointment they suggested I start familiarizing her with the images.  If M and I can sit in the big chair, and they flash these pictures up on the screen, and if she can somehow communicate to me the image that she is seeing!  Well, I would cry.  I'd be that crazy crying lady, who is sitting in a chair with her 1.5 year old, crying because she said 'tractor' when/if she could see that jeep looking thing.  And just to be open about the whole thing - I've only cried in that office once!  After they had done all her exams, and the surgeon met with us to tell us she had the cataract and we needed to start planning her surgery date.  Sure I've cried lots of other places throughout this whole thing, but only once in that office!   

So we've had these images for about 2 weeks and I have yet to get M practicing them...  Our last 2 weeks have been occupied with me going back to work, E starting school for the first time, and M starting daycare.  So we've been busy.  Plus I have to get the images made into fun little cards, magnets for my fridge, and figure out the signs I'll teach her to go along with each image - cause these days most words sound like tractor!

A rotary phone?!  Hilarious image to use right?!  

Off she goes...

M is starting daycare regularly September 3.  We have a few visits before our daycare is really needed, to get everyone ready for this transition.  I wrote daycare a little letter to help them better understand this part of M's life.

Dear Daycare,

I was born February 28, 2012.

I had cataract eye surgery on my right eye November 23, 2012 just before I turned 9 months old.  They removed the lens of my right eye, so now I have to wear a contact that my mom and dad put in every morning when I wake up and take out before I go to bed. 

Since I didn’t have surgery until I was 9 months old I have to work really hard at patching in hopes that I develop vision in my right eye.  If I didn’t have the surgery I would have been blind in that eye.  So I patch all day everyday, no matter what.  All day means all hours of the day that I am awake, except maybe an hour in total.  That’s usually in the morning before I get my patch on, and a little before bed when my parents take off the patch.  

I’m pretty good at wearing my patch.  Sometimes I try to take it off, but my mom says ‘No Maggie, leave your patch on’.  I listen most of the time.  Sometimes if I’m left alone in my crib, or get angry I’ll rip it off even when she tells me not to.  My patch is kind of easy to put on.  My parents always put a little layer of Cavilon cream around my left eye where the patch adhesive touches before the patch goes on.  This helps the patch come off without ripping my skin.  I usually have to lie down to get my patch on, and most of the time I don’t want them to put it on.  But as soon as it’s on, I deal with it and go on my way with few issues.

When I am wearing my patch it’s much more difficult for me to see.  I have no depth perception which means I trip and fall a lot.  Sometimes my mom helps and says ‘Maggie step’ if I’m walking and getting close to a change in heights in the ground.  This helps me in new places, but once I get used to a place she doesn’t need to tell me much.  I also bonk my head and body a lot because I can’t see as much around me as other kids my age.  My mom will say ‘Maggie head’ and I’m usually pretty good to slow down and figure out what’s going to hurt my head. 

My mom wears contacts to help her see but they aren’t quite the same as mine.  My contact only makes my vision clear within the first few feet of me.  If I really want to see something and examine it, I will get my head and eye very close to it.  Sometimes I get close to people too to take a good look at them.  I rely a lot on sound to know where to go, and sometimes I can get lost, and not know which direction I should be going.  Because my contact makes my vision really clear close up I am also pretty busy!  If there are lots of things going on, I want to see it all, so I am busy going back and forth to things so that I can see what is going on. 

My mom has also been working at teaching me to stop and say ‘eye’ when my contact is bothering me.  Sometimes I will stop, say ‘eye’ if there is something in my eye, or if my contact has fallen out.  As soon as I say ‘eye’, if I stop playing suddenly, or if I rub my eye, my mom checks my eye.  She also checks my eye about 100 other times during the day just to make sure the contact is still in there.  My contact costs $175 and she tells me that’s a lot of money – I tell her it’s all relative!

My mom also packed me my contact bag – she takes it everywhere we go!  It’s just a Ziploc full of things that help me: contact solution, eye drops, Cavilon cream, and extra patches.  If ever she has to make a choice between a diaper bag and the contact bag, she always chooses the contact bag.

If my contact falls out when I’m playing, just tell me not to move while you look for it.  A lot of times it’s just coming out of my eye, on my clothes, or just below on the ground.  Take a look for it, but don’t obsess over finding it.  My mother obsesses over finding it, and it’s annoying for me.  When it falls out, and if you find it, just fill up the contact case with solution and put the contact in, and close up the case.  Make sure to take off my patch right away, because without my contact I can’t see anything when I’m wearing the patch.

If you take my patch off, tell me ‘Maggie I’m going to take your patch off’.  I sit super still for this because I love getting my patch off!  If I sit on your lap you can peel the patch off starting at my nose and peeling outward.  If you press on the skin near where you are peeling it helps to not pull on my skin or tear my skin which can then bleed.  My parents always cheer for me when I get my patch off and tell me I’m such a good girl!  They usually let me hold my patch when it comes off for a while – I carry it around like a trophy.  Mom told me I probably won’t be allowed to do that at daycare which will be ok I’m sure, plus she told me I’m supposed to be wearing my patch all day at daycare anyways!

My parents are mostly over it.  Sometimes they still get upset when people ask ‘what’s wrong with her’ or ‘what happened to her’, instead of commenting about me or how cool my patches are.

Eventually (or sooner), you will get used to my patch and contact, and you will start to forget I even wear a patch!  I’m like the coolest and cutest little girl, and I sport a patch!  

Oh, The Places You'll Go!

There's the book "Oh, The Places You'll Go!" by Dr. Suess.  I have read this book so many times, have heard people read this book aloud numerous times, and have heard it integrated into speeches at a variety of occasions over the past several years.  I have just recently reread this book and it takes on a different perspective now having gone through the past 7 months with M.

Here's an excerpt of my new found passages that have taken on new meaning for me, my little girl, and a life after congenital cataract surgery.

You won't lag behind, because you'll have the speed.

You'll pass the whole gang and you'll soon take the lead.

Wherever you fly, you'll be best of the best.

Wherever you go, you will top all the rest.

(This is what I think and feel most days when I think about M and her cataract!)

I'm sorry to say so

but, sadly it's true

that Bang-ups

and Hang-ups

can happen to you.

You can get all hung up

in a prickle-ly perch.

And your gang will fly on.

You'll be left in a Lurch.

(Congenital cataract diagnosis at 9 months old.)

You'll come down from the Lurch

with an unpleasant bump.

And the chances are, then

that you'll be in a Slump.

And when you're in a Slump,

you're not in for much fun.

Un-slumping yourself is not easily done.

(This is describing our post-surgery days...)

The Waiting Place...

for people just waiting.

Everyone is just waiting.

(Waiting and waiting, and hoping for patching to be working and make it all worth it in the end - we wait, we wait and see.)

NO!

That's not for you!

Somehow you'll escape all that waiting and staying.

You'll find the bright places

where Boom Bands are playing.

With banner flip-flapping

once more you'll ride high!

Ready for anything under the sky.

Ready because you're that kind of guy!

And will you succeed?

Yes!  You will, indeed!

(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

(This is what I hope for her future!)

M's Check Up

I took M back to the Children's Hospital for her scheduled check at the surgeon's office a few days ago.  She saw the assistant again and was given an all clear for any issues.

It is suspected that she is developing vision at a greater distance at this point.  She is able to focus and fixate on a particular object that is smaller in size at a farther and farther distance.  It was 3 visits ago that this seemed to be something that I had noticed and they seemed to notice in her examination, and it has seemingly continued to develop during the time between these last 2 visits.  I'm not really sure what it means, other than she is continuing to respond and progress with the patching she is doing at this point.

We are to continue patching M for all waking hours except an hour before bed, until the next visit which is in just over 6 weeks!  Longest span so far between visits; mostly pushed a little because we have a vacation planned...

Diaper Bag

There are some items in my diaper bag that I didn't need with my first child.  M has changed the look of a diaper bag, and made it a necessary bag to take with me everywhere I go - no matter what!

This diaper bag doesn't even really need the diapers and wipes; most importantly I need the contact case, solution, and eye drops.  I think I now have an eye bag, that includes a few diapers...

First Few Words

M is starting to say words, words that mean lots to her, and we can understand some of the time.  She can say words that sound like mom, dad, grandpa, grandma, car, dog, meow, tickle, etc.  And then the other day we were all at the library and she saw this wooden person, pointed to the eyes, and said 'eyes'.  Clear as day!

4 Weeks Gone By

M had another check up with her surgeon and optometrist yesterday.  This was her routine check-up that has been happening every 4 weeks.

All things seem to be fine, and we are to continue doing what we are doing.  This exam, and the last, seem to suggest that M is developing more vision at further distances.  She is able to see large objects at further and further distances.  Her contact still offers her clear focused vision within a few feet from herself, but this distance vision is still developing apparently.

I had a discussion with the optometrist about how M acts when she is places.  She is always racing everywhere to get close to whatever she hears or wants to explore; which results in a darting M racing from place to place everywhere we go.  This is not very conducive to most places I would like to visit...  This apparently is normal, and can be expected, and will be the way it is until it is deemed that the majority of her learning is no longer taking place within her first few feet.  When this happens the contact strength will change, to change the focus point to a farther distance, and glasses will be used for closer vision needs.

We are continuing to patch everyday all day.  Full-time patching continues!

M's next appointment will be in 5 weeks from now.

Another 4 Week Check-up

M had another appointment yesterday with her surgeon and optometrist.

She had her cataract removal surgery on November 23, 2012 and started wearing a contact and patching just over 1 week later.  Which means we've been doing contacts and patching for almost exactly 5 months now.  Which also means that we've been seeing this surgeon and optometrist for 5 months now, every few days, to every week, to every second week, and now to once every 4 weeks.

The first time we scheduled an appointment for 4 weeks later seemed so strange.  We had gotten used to having to take M so frequently to see them, that it seemed odd and wrong not to be taking her.  But, like everything else, seeing these 2 people now every 4 weeks has become something we are used to; in fact this appointment yesterday seemed to come so quickly since the last one, I didn't even realize it had been the 4 weeks.  Previously, I had been counting down the days, and definitely knew when the next appointment was.

So the appointment...  Everything is good.  We are to continue to have M patch full days every day.  Contact looks like it fits pretty well, and we haven't been having too many issues with patching (definitely some issues, but not too bad!).

I did discuss with the optometrist how to keep the contact cleaner.  Despite nightly removals and cleanings, it seems to get cloudier as time goes by, and some days seem worse than others.  The contact still isn't that bad, and the next time we take M to the optometrist (in another 4 weeks!) he said he will show me how to do a hydrogen peroxide cleaning with it.  He would have showed me yesterday, but I didn't think we had much time.  Appointments had been late, and it was getting dangerously close to supper time, with still rush hour traffic to get through.

All in all, things are and seem good at home and at these appointments.  I'm sure most people end up feeling this way, but I just think M's surgeon and optometrist are the best people for us and her.  They are so involved in her care, and are reachable when we need them, and are willing to have discussions about whatever you need to be discussing, when you see them.  I don't know how they got into eyes, but I'm glad they did since we've found ourselves in this position!

Follow Up Appointment #???

M had another appointment at the Children's Hospital with the surgeon.  She was scheduled just to see the orthoptist, but ended up seeing the surgeon as well.  I think M has been experiencing some slight irritation with her contact, so the surgeon was asked to check to see if there was anything of concern.

It was a good visit with the surgeon.  He pointed out that, at this point, the contact is fitting well, patching is going well, so all we need now is vision development.  This is what M is working on, now that the contact is fitting and the patch is staying on.

M then went to see the optometrist.  He examined her eyes as well.  We had a little discussion about patching, and he explained that this time when M is so young is important in her brain-eye development.  M needs as much patching as she can handle so that she has the best opportunity at developing useful vision in the one eye.  The most information I've gotten on - how long do we have to full-time patch?? - is the comment that the optometrist has rarely seen a child over the age of 3 doing full-time patching.  M is 13 months old...  Looks like I'll be ordering some more patches!

Sunglasses

M sporting the new sunglasses!  She's just about used to wearing them, with a few attempts still to rip them off.  

Congenital Cataract Survival Kit

1. Cavilon

This cream was recommended by M's optometrist.  M had been repeatedly ripping off her patches and this was leaving her skin red and bleeding.  We had been putting Calamine around her eye before we put her patches on but it wasn't enough of a barrier between the patch adhesive and her skin, especially when she was ripping her patches off.  Cavilon is a barrier cream.  We put it around M's eye, where the patch adhesive will be touching, and wait a few minutes before putting on the patch.  The cream acts almost as a second skin, so when you take the patch of her face (or when she rips the patch off her face...) the patch is being ripped off the Cavilon rather than right off her skin.  The redness, bleeding, and open skin parts have almost been eliminated with the use of this cream.

I ordered this cream from well.ca, however I'm sure it must be available at drug stores.

2.  Fun Patches

Fun patches helped reduce a lot of questions from people when I would take M out.  The brown generic patches seemed so medical and people were always thinking that she hurt herself - like it was more of a bandaid than a patch.  The fun designs on patches make it more of a fashion statement, more of a permanent part of her life, rather than a temporary thing or accident.  Plus, the patches are fun, and eventually I'm sure M will enjoy picking her patch for the day!

myipatches.com

3.  Sunglasses

I ordered M a pair of these Julbo sunglasses.  I tried ordering these sunglasses online but couldn't find a place that ships from within Canada.  Luckily my optometrist's office carries them and can order them into his office.  I hadn't realized this until I happened to see them in a case at a visit.  When they removed M's cataract, that means that they removed the lens of her eye.  This means that she has no ability to focus images on her own because that lens is gone, and that there is no light filtering happening in her eye, making her world very bright and her eye more sensitive to the light.  These sunglasses caught my eye when I was doing research online for a few different reasons: full coverage of frame and lens to reduce light getting in, flexible and no-hinge frames, wrap around and back elastic strap, and protection from UVA, UVB, and UVC rays.  An added bonus to support my decision on ordering M these glasses, was her optometrist had just ordered a pair for his son who is younger than M.  I got M the Looping III which is supposed to be a size for 2-4 year old.  She tried this size on at the optometrist's office and it seemed to fit her well even though she's 1 years old.

julbousa.com

4.  Contact Case and Contact Solution

Never leave the house without a empty contact case and travel solution!  Contacts were falling out of M's eye all the time at the start, and especially if they are custom lens, you do not want to lose them when you are out.  Having a case and solution at least gives you a fighting chance at saving the contact should it fall out.  Now M has a custom contact that fits really well, and it hasn't fallen out in several weeks, so this isn't as big of a concern right now.  However, at the start, her contact was falling out several times a day, and we definitely didn't go anywhere without the case and solution.

5.  Moisturizing Eye Drops

A lot of times M's contact, again especially at the beginning when trying to get a contact that fit properly, would get wrinkly and dry.  The drier the contact gets the more likely it is to fall out.  We bought some moisturizer drops recommended by her optometrist, and again carry these everywhere we go just in case her contact needs some extra liquid!

Another Check-Up...

Today M had another appointment with the surgeon at the Children's Hospital.  He is still seeing her at regular intervals to monitor her recovery from surgery, eye pressures, and patching.

The appointment today was positive.  There are no issues or worries at this point.  Patching is to continue full days except the hour before bed.  It seems as if this will continue for a long time.  Today when I removed her patch at the doctor's, the optometrist assistant said that she immediately started using her non-cataract eye (the one that had been patched).  This is not what is wanted.  They are watching for when M will not immediately switch to her non-cataract eye when given the opportunity.  Eventually, it is thought that when a patch is removed she will not immediately switch to only using that eye, instead she will continue to use her cataract eye for a few seconds before switching.

M has an appointment at the surgeon's office again in 4 weeks and he said that he will not be seeing her at that appointment.  He will see her at the 4 week appointment after that.  He said the main reason to see him at these appointments is so that he can monitor for pressures and work to get the contact fitting right.  Considering that the contact is now fitting really well, and pressures have remained ok to this point, he will need to see M less frequently.  Which is all good news.  It just all means we have to keep plugging along on the patching train.

M then went to the optometrist's office.  We went to show the optometrist the current contact that is in M's eye.  He agrees that this contact is the best so far, and that it does fit well for her at this point.  We will see him if any issues arise, or again probably after the 4 week appointment at the surgeon's office.

Things People Say...

What happened to her eye?

I have been asked this question sooooo many times!  Complete strangers in the grocery store, doctor's office, mailbox, walking on the street, at the library, at restaurants when we are sitting eating, etc.  No place seems to be off limits for people to ask me this question.  

What's wrong with her?

Honestly...

Did her brother hit her?  No?  Did she hurt it?  No?  What happened to her?

Particularly loved this 'conversation' at the mailbox.  A man asked me this in front of both  my kids!  He seriously asked me if my son had hurt my daughter and if that was the reason for the eye patch!  One would seriously think that maybe this was said in a joke, but I can assure you it was not a joke.  I've come to answer questions with vagueness now and this man just continued with the questions until he got specific enough information.  I finally told him she was born with a cataract and he told me he didn't know babies could get that.  I said we were super special, and I should start buying lottery tickets!  I find it hard to get out of these conversations with strangers.  There isn't enough time to tell them what's really going on with the patching, and not enough time to make them understand what it all means.  They just want to hear me say she was born with a cataract and they move on with their lives.

Why does she have to wear a patch?  

I think I'm going to start answering - just for fun!  Thought I'd experiment a little with my kids' eyesight just to see what happens!

How long does she have to wear a patch?

I actually don't know.  What I do know is that it's a long time and no one will tell me exactly how long it's going to be, because they know it's longer than a parent wants to think about having to patch their child.  So I say a long time, maybe years.  People don't really understand this, and I find when I'm packing my groceries I don't really have time to explain the theory behind patching...

Can she see?

Not sure!  I assume she can see something!  But again, not sure why someone would ask me whether or not my child was visually impaired!

That's most of the questions that I can remember, which when written in a list like this doesn't seem too long.  But...  the number of times each of these questions gets asked, especially the first one, is shocking.  I honestly would never ask or point out something that is 'wrong' about a person's child, especially as a stranger to them.  And I would NEVER say something that speaks so negatively (meaning that it points out a visual difference) about a child in front of them and siblings.  M understands a lot of what we say to her, and thinking about the number of times she has heard questions and talk about her eye to strangers, I know she does or will soon, understand that they are asking about her eye because it is different than those people and kids around her.  E definitely understands that this is something different about her, and he has started answering people's questions when they ask.  When people ask these questions, in front of my two kids when we are out and about, it really turns the focus to something that is a part of life but not the only part.  

We live in a relatively small town so I figure that if people keep asking me or my husband what happened to our daughter at the current rate, mixed with a little talking amongst moms/people, that eventually all of Arnprior will know - then maybe the questions will stop?!  

Congenital Cataract FAQs

Congenital Cataracts... and what those words mean to M...

1.  Congenital means a person was born with it - M was born with the cataract in her right eye.

2.  Cataract is a clouding of the eye.  The lens of the eye is normally clear and transparent.  The pupil should be uniformly dark black.

3.  An infant can have a unilateral (one eye) cataract or bilateral (two eye) cataracts.  M had a unilateral cataract in her right eye.

4.  The size, density, and location of a cataract can affect how an infant is seeing through the cataract.  M had a large, dense cataract in the center of her lens that was affecting her vision out of that eye.  M needed to have surgery to remove the cataract or she would have been blind in her right eye.

5.  Cataracts are formed from proteins accumulating on the lens of the eye.

6.  In most cases physicians don't know why infants are born with cataracts.  Some reasons could be hereditary or exposure to certain viruses in utero.  M has no family history of cataracts, and wasn't exposed to any viruses that we know of.

7.  If one eye isn't working as well as the other the brain will ignore the images from the 'bad' eye.  M's right eye with the cataract was receiving only some light, and unfocused unclear images.  Her brain had been ignoring the messages that eye was receiving.  This results in 'lazy eye' which M did not noticeably have but would have had eventually.

8.  With a unilateral cataract the brain relies on the messages being received from the eye with no cataract.  M's brain had learned to not use her eye that had the cataract.  Her brain had already switched off that eye, and was relying on her left eye for sight because it was sending clear and focused images to her brain.  This is where the world of patching begins after surgery; M will need to patch her 'good eye' in order to require her eye that has already been switched off to start working again.

The End of Eye Drops

Yesterday M had an appointment with her surgeon and her optometrist.

The surgeon met with us and M is to continue with full-time patching of her 'good' eye all hours of the day except the hour before bed.  That is the bad news.  The good news is we are able to stop giving her eye drops.  After surgery I believe we were giving her 9 drops a day.  Over the past 2.5 months we have been cutting those drops down.  For the past 4 weeks it had just been 1 drop a day, and now even that is over!  It feels weird not to have to put some sort of drop in her eye, but I'm sure we will get used to it again quickly!

The optometrist met with M just to take a look at her contact in her eye.  He had already seen this contact in her eye so it was a quick appointment.  We are still waiting for another custom contact that has been ordered to help fix the issues that this current custom contact has.

We have a follow-up appointment with the surgeon in 3 weeks to assess the progress of her eyes and how they are working together.