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!

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.

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!

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!  

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?

My Busy Little One...

So M is active - like really active.  I know, I know, people will say she's not active, or 'not that bad', or they've always seen someone more active than her.  But she is fiery!

If you take her anywhere, she hates to be held or not allowed to be put down because she wants to roam around and look at things.  Sure - usual behaviour for a 16 month old but...  The real issue here is that for her to look at all the items in a store for example, she has to get down from my arms or out of her stroller, and sprint around the store to every item so that it is about an inch away from her unpatched eye.  This is where her clearest vision point is at this point with this contact.  She's wild!  She runs around, getting super close to everything, just to really check it out.  This doesn't make for a very easy child in a store.

We took her to a barbeque a few weeks back and she was running back and forth in the backyard darting between the climber and the trampoline.  There were kids on both structures and she wanted to see both sets of kids on the play equipment.  So she'd be at the climber examining and watching what was going on, and then when she heard kids having fun on the trampoline she'd run over there to examine what was happening.  By the time she'd make it to the trampoline, something she thought sounded interesting would happen at the climber so she'd have to race back to see what was happening.

Eventually I felt so sorry for her, having to dart back and forth so many times, I unpatched her.  It was getting later in the day, and cut her patching for the day short by an hour maybe...  I unpatched her while she was sitting on my lap and she sat in my lap watching what was happening in all of the yard from one spot.  She no longer had to dart from place to place to see what others were doing.  She sat, content, in one spot, and watched what was happening all around her from the safety of her mom's lap.

This is one way that patching changes the behaviour of my child on a daily basis.  Not necessarily for the worse, but just a different behaviour that takes some energy on her part and mine.

Goofy Kid with a Patch

Trouble in the Car

For the past few weeks M has been a nightmare in the carseat with her patch.  A short drive into or around town always ends with her pulling off her patch.

We haven't used, needed to use, the arm restraints I had purchased a few months ago.  She has been so well behaved when it came to her patching, so these arm bands were just sitting on the shelf.

Since the start of this patch ripping in the car, I've put these on M for most car rides.  And she tolerates them!  She has yet to cry or fuss when I put them on her in the car, and of course it doesn't allow her the opportunity to rip off her patch.

So far, since we've now sadly found a use for the arm restraints, they have been working pretty well to provide with a patched and somewhat happy baby in the car.

Hopefully the reason for this new desire to rip off her patches, are the several monstrous teeth cutting through her gums...  Blaming it on teeth!

New Patches Arrive!

I ordered some more patches for M.  We've only made 1 previous order from myipatches.com and those patches were just about finished.

This time we ordered a few different designs then last time.

I don't really like patching or patches, but it was a little bit exciting to get these in the mail today, and see a few different designs that M will be sporting in the next little while.

Riding in the Car

M has been notorious for ripping her patch off when strapped into her car seat.  I used to buckle her in and the patch would be ripped off before I could get the car out of the driveway.  When we were deep in this problem the weather was colder and she needed to be wearing a light coat in the car, so I had had her wearing a coat that had hands that folder over.  That solved the problem for that time of year, and as the weather has been getting warmer outside, I knew that that coat solution was coming to an end.

So it's warm now!  Very warm for the past week, and it has been shorts and t-shirt weather, definitely not fleece coat with mittens kind of weather.  M has been in her car seat for a variety of length of trips, with no mitts, and she has not yet attempted to rip off her patch!  Now I just buckle her in, she plays, or naps, and doesn't seem to recognize the opportunity to free her second eye.  Hopefully this trend will continue!

Pushing the Patching

At M's last appointment with her surgeon, the lady asked when are we patching.  I gave her general hours that we patch from the morning until night.  And she always replies - ok.  Like a non-judgmental 'ok'.  She doesn't say that it's a great amount of time to patch, we should do more, that we and M are doing a good job; she just says 'ok' all cheery like.

I think the attempt is being made to be non-judgmental without encouraging us to do less patching, or scolding us for not doing enough patching.

But I have a hard time with silence, and hearing an 'ok' from someone who I know is thinking in her head - we're doing a good job, or they could be patching more.

So... I try to fill the space.  I said I thought we were doing a good job, I have been thinking I could probably add an extra 30 minutes to the end of every day but it's a really hard time of day.  The 2 kids are super hungry and therefore usually quite angry, my husband isn't home from work, and I'm working on making supper usually with 1 or 2 kids crying around me, being held, or throwing some sort of tantrum in the middle of the kitchen floor.  Let me answer the question you may be thinking to yourself - yes, I've tried feeding them earlier or have attempted to give them snacks.  But M in particular is only willing to accept supper at this point.

So since this appointment, where I was 'not judged' by the lady we see, I have been working super hard to get supper ready 30 minutes earlier for M to eat, and then we all eat when my husband gets home from work just as M is finishing.  This most days, gets us another 30-45 minutes more of patching.

So by the time I left the office at the appointment I had talked myself into doing this new schedule, because I apparently was feeling guilty for not patching this extra time.  I told the lady that I had to weigh my quality of life against an extra 30 minutes of patching, and well quality of life had been winning.  From the one-sided conversation I had with this lady, simply as a result of her asking me how long M was patching, I figured I must be suffering from some internal guilt.

So with a few changes, a little push from my conversation basically with myself to the lady, and patience, we have lengthened M's patching day by about 30-45 minutes everyday.  We are patching full days everyday, but now each day is just a tiny bit longer.  Instead of her having 1.5 hours of no patching at night, it's now closer to just the hour we were supposed to be having her unpatched at the end of the day.

Sand...

M at the park!

Except she flung sand and must have gotten some in her eye.  She  was rubbing her eye, and it quickly became red and irritated, and a little puffy.  I tried eye drop after eye drop to get some sand out (not that I could see any but figured it must be in there), and managed to get her home, fed, and put down for a nap, still with the contact in and patch on.  I was trying everything to keep the contact in and patch on...

I was hoping the nap would make it better?!

She woke up from her nap, eye still definitely irritated, so I had to remove her contact, and thus remove the patch.  She ended up with a fun day at the park, an irritated eye, and a shorter patching day...  A day like this makes me think I should get good at putting the contact in her eye by myself; then I could have taken it out, cleaned it, and put it back in and not lost patching time.  Soon!  I might work on that...

Snippets

M has been in some sort of patching utopia lately.  For, what seems like months, M has accepted putting on her patch every morning with very little fuss, rarely attempts to take her patch off herself, and is eager and ready for me to take her patch off while sitting on my lap at the end of the day.  Of course, it's probably been a few weeks of great patching days, considering we've only been at this patching thing for a few months...

Things have been going so well lately.  Full day patching at it's best!

M has changed...  She's still really good at this whole patching thing, but...  Things have changed.

Here's a little screenplay version of some of our daily moments:

Scene 1
Mommy: M don't touch the fireplace.

M: screams and tries to touch fireplace again.

Mommy: M don't touch the fireplace.  Removing M from the area of the fireplace.

M: Puts her hand up to her patch angrily as if to threaten ripping it off her face.

Mommy: No M!

M: Realizes that could be a bad idea, and decides to not rip her patch off OR she throws herself to the floor in a full tantrum always banging her head.

This situation is being repeated throughout our day, with a variety of no-no's inserted where the example of the fireplace is used.

I blame the fact that she's getting 4 upper teeth right now.  We've been working on the different stages of those first 4 uppers for probably the past 2 weeks.  Considering to date she only has 3 teeth in total out, I'm thinking if teeth is the current issue in patching right now, it could last much longer than I'm hoping it will!

Napping with a Patch

I finally got around to it: my newest nap invention for M!

I'm hoping this combination of shirt and added fabric will work better as the weather is getting warmer.  Plus, there won't be the need for the mittens underneath the diaper shirt which will make getting ready for naps a little less of an ordeal.  This shirt is not sewn at the end of the sleeves.  I instead just sewed a circular tube out of some thicker fabric, and then attached that tube to her shirt sleeve.

The first thing I needed was fabric to attach to the end of the long sleeved shirt.  I cut out two rectangular shaped pieces of fabric and folded them over ready to sew.

I sewed around 3 edges of these pieces of fabric, leaving the 1 edge open creating a kind of pocket.

The next step was the slip this piece of pocketed fabric over the bottom part of the shirt sleeve.  This way hands can come out of the shirt like normal, but can't rip off any patches because the hand is inside this fabric pocket attached to the end.

I hand sewed the fabric pieces on the bottom of the shirt.

The idea was that the thicker fabric addition will make it harder for her to pinch through the fabric to rip her patch off, and give her hands and arms some more mobility and air.

So far, fingers crossed, this has been working really well.  I would imagine it is more comfortable for her to nap in then the mittens and it seems to give her more ability to move, without the ability to pinch her fingers and get to her patch.

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.