Contact: Getting it out of the Eye

This video clip shows how we take the contact out of M's eye.  I would say this is easier to do than inserting the contact; however, at the beginning insertion and removal seemed equally as difficult.  This video clip shows contact removal with 2 people.

M just lies down now and we tell her it's 'contact time'.  Again, we use two people to do this still just because it is easier.  My husband lies her down and pulls up and down on her eye lids.  I can usually get the contact on the first try, however sometimes it rolls upwards if M rolls her eye upwards.  When she does that I have to try again to get it when it is lower in her eye.  The video shows this happening.  I try the first time and the contact is too high in her eye, so I have to wait and try a second time.

It's just a gentle touch on the eye with a thumb and index finger, and a little motion bringing the thumb and finger together to touch and the contact usually comes with it.  It's hard to describe the motion in words.  I wear contacts myself, so I think that helps figuring out how much pressure to use, and finger motion to use.

This is a recent video which means all 3 of us have had over 3 months of daily practice.  At the beginning we had one person kneeling on her pinning her arms down while opening her eye.  The second person just focused on removing the contact.  This took several tries and many minutes, all while M screamed at the top of her lungs.  Look back at this post to see what it was like at the beginning.

M's optometrist had asked if we would mind recording and sharing the video with him so he could share a variety of people's techniques with others dealing or struggling with contact insertion and/or removal.  I thought that was a great idea, and was the inspiration for this post!  We are still working on getting a recording of inserting the contact in M's eye.

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!

Red Reflex

This is another picture that I have found looking back through photographs of M.

This photograph clearly shows an abnormal red eye reflex.  Her left eye is red, exhibiting red reflex, in this picture because the left eye has no cataract.  Her right eye shows no red, and this is because that eye has the cataract.  Check out a previous post and picture of red reflex.

Any irregularities in this red reflex, or any differences between the red reflexes in the eyes, are reasons to make sure your child is seen by a doctor as soon as possible.  The sooner a cataract is found in an infant, the better the outcomes.  Early intervention is what counts.

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!

Inventions

Ok, I'm not sure if I invented these things or methods, but I have come to rely on a few of these tricks to make sure M kept her patch on during those terrible early patching days, and keeps her patch on these days during her naps.

This coat has been a real blessing for the car.  The hands fold over so she can't rip her patch off in the car.  For a while this was her favourite car activity.  I would buckle her in and we'd be barely out of the driveway and she would have already ripped off her patch.

I then tried her mittens on her that have the elastic drawstrings.

A drive of any length left her enough time to vigorously shake her hands and send the mitts flying, to then rip her patch off.  This coat means we can all relax in the car, knowing that she has no ability to get that patch off.

I thought this was clever!  M's second favourite time to really rip her patches off were during her naps.  She would rip them off before sleeping, and if she manages to do this, the chances of a nap are slim, because she 'parties' with both her eyes in her crib.  So first, again, I tried just having her nap in the elastic drawstring mittens.  This worked for a few naps and then she learned that she could just shake them off, pull her patch off, and have a crib party.  Then I bought a long-sleeve diaper shirt and sewed the arm holes closed at the end.  This worked great!  For a few naps...  She wore the diaper shirt, and she couldn't escape it, but the fabric of the diaper shirt was too thin.  She still managed to pull her patch off through the fabric of the shirt.

So now, and we are still doing this for all naps in her crib, she wears her mittens inside this sewn up diaper shirt.  Her mitts are too thick to do any pinching or grabbing through, and the sewn up diaper shirt ensures that she can't shake those mitts off.  Putting on her mitts and diaper shirt before naps has become her routine now.

Patching: From Beginning to Now

The first 2 days of patching were the worst days I think I may have experienced in parenting.  That probably includes waiting for, and having surgery done, on M.  I knew that I had to patch her, and there was no choice.  I knew that I needed to patch her now that the cataract had been removed, or she wouldn't be able to see out of that eye ever.

She sat on the floor, unable to move around, wailing.  I carried her around wailing.  No matter what I did she cried.  She cried for hours, all day, for all the hours she was patched for those first 2 days.  I knew the way I could help her was to keep her patched, and just keep on going.  I knew it wasn't really helping her by giving up, taking the patch off because she was upset, or only do a little bit of patching.  Those 2 days were hard, almost unbearable to be in this house, with her crying and so obviously upset.

As long as those 2 days were, each day after that got easier.  It appeared as if she could see more and more each day.  She always needed me to be super close to her, and always needed to know where I was.  I suspect this was because she actually couldn't see where I was.  She would seem to get lost sometimes in our house; she would circle around crawling a few times in a spot and then start crying until I went to pick her up.

After a few days she started being able to crawl again - a little bit.  When she first started to crawl with her patch on she ran into our couch.  I used to have to nurse her all the time for comfort rather than for sustenance.

It's been about 3 months of patching for M.  Most days now are 'good' patching days.  You can say to her in the morning 'it's patch time' and she will stay still and let you put her patch on.  We used to have to pin her down, one person holding her while the other put on the patch.  She used to scream this whole time.  She rarely even attempts to rip at the patch during these first few minutes.  This has been a big change; for weeks the first 15 minutes after having the patch on her eye were the most likely times she would rip the patch off.  Some days we would go through 10-15 patches in those first 15 minutes.

M can now maneouvre around our house, avoiding most objects including walls, couches, tables, and little toys.  She can also get around our local library, grandparents' houses, and new locations.  She smiles and plays when she is wearing a patch, and the difference in her personality between when she is patched, and when she's not patched, is getting to be closer.

It seems like she has changed so much from those first few days of patching, when it seemed like she was literally blind when patched.  Some of those first few weeks I would put two patches on her, because I thought she must be peeking through a hole or crack somewhere because the changes in how she was getting around the house were so dramatic.  Despite multiple patches she still managed to get around, so I'm now pretty sure she wasn't peeking!

The changes have been so dramatic since we started.  She was so miserable and would fight the patch.  There were days she cried all day with the patch on.  There were days she ripped so many patches off her face, that her face was bleeding.  Everyday I put her patch on now is easier.  I still feel guilty for having to do it, but I know that it is helping, and her eyesight is changing.  I also know that because we have stuck with it over the past few months, we now have a little girl that is becoming accustomed to her patching and the future of her vision will likely be better because we have gone through these past 3 months.

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?!