Farewell to Reducing

M had almost 6 weeks of glorious patching reduction!  They were great.  She still had a patch on from 7:30 am until 3 pm, but not having to wear a patch from 3 pm to 5:30 pm did make a difficult portion of our day a lot easier.

6 or so weeks has passed with this reduction schedule, and she has had her appointment to see if the reduced hours made a difference in her vision.  After 6 weeks of 2 less patching hours a day, she has had a decrease in her vision.  She sees less images now then she did when she had the full time patching hours every day.

We kind of have two choices: keep patching at the reduced hours and be happy with the vision she maintains, or increase patching time and try to get her staying longer at the increased level of vision.  

I think we will make her increase her patching hours again, in hopes of regaining the few images she lost since her last appointment.  I was hoping the vision would have been the same, and we could have further reduced her patching hours.  Instead, I think we'll increase her hours, and keep on going with the original goal: to do everything we can to try and get the best possible vision outcome.   

She has done better than we could have imagined.  We are happy with what vision she has, but now that we know she can get a little more, it's hard to let those few images go.  

Reducing!

M's appointments lately have been testing her vision and getting between 20/25 and 20/30.

I had talked last appointment about beginning to consider reducing patching, in hopes that we could get the hours down before she starts school in September.  So this visit was the last before I hoped they would say it would be ok to reduce the patching hours.

M did so well with her pictures and got her highest number of pictures on the vision chart to date!  I think she did 4 out of the 5 pictures on the 20/25 line!  So they gave her the go ahead to start the slow weaning process.

Up to now she has been wearing a patch for all waking hours except about 2 hours.  Now she can be patch-free for about 4 hours a day!  So she'll put her patch on in the morning, and be able to take it off around 3 in the afternoon, stead of 5:30.  She is so excited for more time during her day without her patch.

At her next appointment, she will have to be able to read the same pictures at about the same level in order to continue at the reduced patching hours.  If she can still read the pictures we reduce the hours even more.  If she has difficulty reading the pictures, it means her vision is regressing without the intense patching, and the patching hours would have to increase.

She has been wearing a patch for most of her waking hours, almost everyday for just about 3.5 years. I can list most of the days she has been without a patch: her birthdays, Christmas Day, and any time she had an eye infection.  It has been an incredibly long journey.  I feel like this appointment was the first time that there is 'an end'.  It's a turning point, something different than the last 3.5 years, a point at which she has been working so hard and it's now that that is paying off.  Now is the time, that we get to change the long hours, and start a another journey that might continue to get a little easier as appointments come and go.  Hopefully!

Getting Close to Reducing...

M's appointments have continued to be every 5-6 weeks.  These images are very much a part of her life!  

Her last 2 appointments she has charted at about 20/25 and 20/30.  She seems to be kind of settling in between these two measurements.  Since she has had 2 or so visits at about the same measurement, she is going to patch for another 5 weeks and then start on a patching reduction schedule.

Currently she still patches all day everyday.  For her that is about 10-11 hours a day.  She's awake about 12 hours a day.  

I was asking about reducing her patching soon, because she is going to be starting school in September.  Ideally, I would love if she didn't have to do any patching at school.  So I'm interested in reducing patching hours, seeing if she can maintain the vision she has, and then get a patching schedule that is compatible with school.  

Realistically, almost everyone in our town knows her, or has at least seen her.  I don't know of anyone else in our area that is patching right now, or at least that we have seen.  Plus, she has fielded questions about her patching from at least 60% of our town by now.  I don't think school would be much of an issue if she did have to do some patching.  I would just rather her not have that be a part of her school day.

Patching seems to be getting more difficult (aka more whining, crying, and fighting), so I'm hoping a reduction will help a bit!  Just another few weeks, and maybe she won't be an everyday all day patcher!

Then to Now!

3 years ago...

M had surgery to remove a cataract from her right eye...

She was 9 months old...

After surgery she was about 20/2200...

Which means she could see at 20 feet from her what we would be able to see at 2200 feet...

Now...

She's 20/25!

And still patching, in the hopes of getting to 20/20!

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!

Matching Patches

M

Practicing

M has been very involved with her contacts and patching lately.  She is very willing to pick out her patch in the mornings (we ordered a large amount of variety with our last order that she helped me pick out online), and is almost always agreeable to getting her patch put on.

She has been wearing monthly disposable contacts for the last several months (more than 6 now I think).  She is always able to have her old contact when we start using a new monthly contact.  She loves getting to play with the old one!  She gets a contact case, keeps it in water, carries it around, takes it in and out of liquid holding it, and just examines it.  The old contact usually only lasts for one day in M's care, but she enjoys getting to handle it the way she wants to.

The other day she was putting her old contact in her doll's eye.  Handling it just the way we do, and trying to insert it into her doll's eye.

Perhaps a few more months of getting older, and more practice on the doll, may result in her being able to put in her own contact!

Taking Out Her Own Contact

M has reached a milestone I thought was unreachable!
I thought this day would never come.
I thought it was ridiculous when I saw other blogs saying that their child could do this at the age of 3.
M is so proud.
She does it every night now.
She reminds me every morning she is going to do it at night time.

Any guesses?!

She can take out her own contact!!

I hold her eyelid, and she puts her finger to her eye, and takes out her own contact.  My 3.5 year old (will be 4 at the end of February) can take out her own contact!

The New Contact

The new contacts M is able to wear now are disposables!  That means no more custom lens for now.  The custom lens she has been wearing for over 2 years were $175 each.  We had lost a few, and eventually they just need to be replaced after a few months of wear (I don't think she had one that was more than 3 months old ever!).  The new disposables are monthly lens and they come in a 6 pack!  Only about $70.00 for a pack of 6!  I tell her 'if your contact falls out or you lose it - it's no big deal!'

The change in prescription has changed M's life.  She is able to see so many more things at greater distances.

This is a picture of how she needed to colour with the custom lens to be able to see what she was colouring.

This is a picture of how she can colour now.  Notice the difference in how close her face needs to be to the paper.  The new lens allows her see from a farther distance, and therefore doesn't need to be so close to focus properly.

So over the past 2 years her brain has been developing because of all the patching she has been doing, her eye has been growing, and those things combined with a prescription change at this time to meet those needs, has made a dramatic difference in her vision.

When she is patched she can navigate herself around town, seeing stores, landmarks, and streets.  She is able to see lower flying airplanes or helicopters and track them in the sky.  She is able to participate more in book reading, showing more interest in the stories and pictures.

We love her new contact because it makes her see better and because they are so relatively cheap!

Contact Prescription Change

M began to react negatively to her custom contact that she was wearing.  Her eye would get all red, puffy, and generally irritated.  It was hard to get the contact into M's eye without her screaming, and it was even harder to keep it in longer than a few hours a day.

Eventually it became obvious that it wasn't just a random or infrequent occurrence, and I made an appointment for her with her optometrist.  She managed to keep the contact in until the appointment time, and showed up ready for an examination with a puffy red and irritated eye.  I was hoping I could get her there, it was at the end of the day, with the contact still in so the irritation could be witnessed by the optometrist.

The optometrist agreed, and called it 'an angry eye'.  Her eye wasn't happy with something, and something needed to be changed so that she could keep wearing her contact and patching.  The optometrist happened to have a few disposables in his office, and gave us two to take home and try.  They were both a change in prescription, size of lens, and type of material.

Even though these contacts were much larger than her previous custom lens, we were able to get them in her eye.  We had tried contacts this size 2 years ago, but they were much too big to fit and get into her eye.  So she has grown, and these larger contacts are now able to fit.

After taking these trial lens home, we realized that these were much better for her at this point.  She was happier, her eye was happier, and she could see so much better!

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!

Matching Patches

M has been a bit of a pain with her patch for the past few weeks.  Most days she uses about 4 patches, and can get the number into the double digits some days.  She has had a cold, and is working on getting 2 teeth, which I hope is the reason for this sudden onslaught of patch assaults.

To encourage more patch wearing, I have been offering M the opportunity to put patches on her favourite (could be only as well) doll.  This is a series of pictures just after they both got their matching patches on.

Hailey got her patch on just like M.

 M is admiring how her and Hailey's patches match!

 Hailey gets a big kiss from M for being such a good girl with her patch on.

Hailey also gets a great big hug for being such a good girl with her patch!

And finally M gets to take Hailey's patch off because she's been such a good girl!

Hope I'm Not Jinxing It...

M has been using this same custom contact since the beginning of August!  It really seems like it has been a contact that we have had forever, and for whatever reason it has had very few issues.  It has only wrinkled or rolled in her eye I'd guess less than 5 times in these past 2 months!  Which is amazing!

We went on a vacation for the first 2 weeks of August and (of course!) took a spare contact with us.  I really didn't think we would make it through a vacation without losing one.  And it got lost, somewhere in France.  I knew that we needed a spare, because if we had her on vacation, and lost the contact and didn't have a replacement, it would have kind of ruined our trip.  I would have been worried and festering over her not wearing her contact, and not being able to clock patching time.

I included these 2 pictures, because you can really notice the contact she's wearing.  It's a strong magnification (+20 I think...) so her vision is clear within the first few feet of herself.  Her contacts so far have a slight tendency to ride a little low, but usually fixes itself to the perfect position after a blink or two.

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!)

Spot the Patch!

These days M is going through 1 to 3 patches a day.  The occasional patch gets ripped off when she is supposed to be napping, or gets angry that she is still in her car seat.

When I take her patch off at the end of the day she is allowed to hold and carry her patch around.  She thinks that it is some kind of reward - she holds it in her hands, walks around with, occasionally tries to stick back on her somewhere in the middle of her forehead.  I like when she does this - kind of shows that she is aware that she wears the patch, that it has come off, and that even when it's off it is still a little part of her.  

Eventually she forgets about it, and usually just drops it where she is playing.  

Can you spot the patch?