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!
Friday 13 December 2013
Tuesday 15 October 2013
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.
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!
Sunday 6 October 2013
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.
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.
Saturday 7 September 2013
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?!
Tuesday 20 August 2013
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!
Wednesday 24 July 2013
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.
(This is what I think and feel most days when I think about M and her cataract!)
(Congenital cataract diagnosis at 9 months old.)
(This is describing our post-surgery days...)
(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.)
(This is what I hope for her future!)
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.
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.
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!)
Sunday 14 July 2013
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?
Tuesday 9 July 2013
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...
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...
Monday 8 July 2013
Friday 5 July 2013
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.
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.
Thursday 4 July 2013
Wednesday 3 July 2013
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...
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...
Tuesday 2 July 2013
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!
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!
Tuesday 11 June 2013
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.
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.
Monday 10 June 2013
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!
Thursday 30 May 2013
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.
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.
Sunday 19 May 2013
A Cold
M seemed a little extra miserable on Friday and then was definitely sick by Friday night with a runny nose and congestion. I'm not sure if it's because she wears the contact everyday, or if this is just how she was made, but when she gets a congestion type cold she always seems to get an infected eye in that contact wearing eye.
So Saturday, and now Sunday, have been contact and patch free days. Her eye is just so red, watery, and irritated, that there's no point in suffering through what I would imagine would be great discomfort when wearing a contact. We've been through this before with her a few times. If the cold is bad enough, it always affects that eye, but at least now we know this is what happens with her. The first time it happened it was a month after her cataract removal surgery (Christmas Eve day), and I hadn't discussed with her surgeon what to do should we think the eye had an infection (because M was seeing him so frequently I hadn't thought there was a need...). So in hopes of not having to go in on Christmas Day, I took M to the emergency at the Children's Hospital, where she had had the surgery, and tried to have someone look at her. They of course, heard the words 'eye surgery' and immediately contacted a few people and got me an appointment at the Eye Institute the next day.
Today she's looking better, and I suspect tomorrow will be the day we return to contacts and patching again.
So Saturday, and now Sunday, have been contact and patch free days. Her eye is just so red, watery, and irritated, that there's no point in suffering through what I would imagine would be great discomfort when wearing a contact. We've been through this before with her a few times. If the cold is bad enough, it always affects that eye, but at least now we know this is what happens with her. The first time it happened it was a month after her cataract removal surgery (Christmas Eve day), and I hadn't discussed with her surgeon what to do should we think the eye had an infection (because M was seeing him so frequently I hadn't thought there was a need...). So in hopes of not having to go in on Christmas Day, I took M to the emergency at the Children's Hospital, where she had had the surgery, and tried to have someone look at her. They of course, heard the words 'eye surgery' and immediately contacted a few people and got me an appointment at the Eye Institute the next day.
Today she's looking better, and I suspect tomorrow will be the day we return to contacts and patching again.
Friday 17 May 2013
Wanted: One Custom Contact!
We lost a contact a few days ago... This is the second custom contact that has been lost since we started this process.
Luckily, I had just ordered a spare, since we had been using this contact for a while, and it fits pretty well.
Now M is using what was the spare, and I'm thinking I should order another - this time for a real spare, a spare contact that actually remains a spare for more than 2 days before being called up!
On the bright side, because it's a new contact, it is so much clearer in appearance, less cloudy, and much easier to handle when getting it in and out of M's eye.
M had her cataract removal surgery on November 23, 2012. Since then we have needed 3 custom contacts, which means we have paid $525 for contacts thus far. If I order another as a spare, that'll be up to $700. We've been at this for almost 6 months, and I'm of course hoping custom contacts manage to last longer, get lost less frequently, or get found easily when lost! In the world of babies wearing custom contacts, M's number is still pretty good.
Luckily, I had just ordered a spare, since we had been using this contact for a while, and it fits pretty well.
Now M is using what was the spare, and I'm thinking I should order another - this time for a real spare, a spare contact that actually remains a spare for more than 2 days before being called up!
On the bright side, because it's a new contact, it is so much clearer in appearance, less cloudy, and much easier to handle when getting it in and out of M's eye.
M had her cataract removal surgery on November 23, 2012. Since then we have needed 3 custom contacts, which means we have paid $525 for contacts thus far. If I order another as a spare, that'll be up to $700. We've been at this for almost 6 months, and I'm of course hoping custom contacts manage to last longer, get lost less frequently, or get found easily when lost! In the world of babies wearing custom contacts, M's number is still pretty good.
Thursday 9 May 2013
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!
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!
Wednesday 8 May 2013
Spare Contact
M has been wearing the same contact now for a long time (or at least it seems like a long time). Again, we've only been doing this whole contact, patching, cataract thing for just over 5 months now, so it can't really be that long...
Anyway, the fitting seems to be good with this contact, and it rarely falls out or floats around in her eye. So I ordered a spare. I hadn't previously ordered any spares, because we hadn't had a contact that I would want a duplicate of. This way should we lose the contact, we will have an immediate replacement.
So far in the world of contacts we have invested, including this recent spare, $525. Which means we've had 3 so far. We've had a few others that were traded in when we trying to get the right fit. Out of the ones that fit right, the first one we lost, the second one we are currently using daily, and the third is a spare for when that second contact bites the dust!
Anyway, the fitting seems to be good with this contact, and it rarely falls out or floats around in her eye. So I ordered a spare. I hadn't previously ordered any spares, because we hadn't had a contact that I would want a duplicate of. This way should we lose the contact, we will have an immediate replacement.
So far in the world of contacts we have invested, including this recent spare, $525. Which means we've had 3 so far. We've had a few others that were traded in when we trying to get the right fit. Out of the ones that fit right, the first one we lost, the second one we are currently using daily, and the third is a spare for when that second contact bites the dust!
Tuesday 30 April 2013
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.
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.
Thursday 25 April 2013
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...
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...
Wednesday 24 April 2013
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!
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!
Friday 19 April 2013
Contact: Getting it in the Eye
This is a video showing how we get a contact in M's eye every morning. This video is recent, and so when you watch it please remember we have now had over 3 months of practice with it. When we first started, this is not what it looked like! Check out an earlier post to see what it was like to get the contact in at the beginning.
We still use 2 people to get it in her eye in the morning. My husband still kind of loosely kneels over her body and pulls on her eye lids opening the eye so I can insert the contact. It usually only takes us 1 try in the morning to get the contact in, and she rarely fights us anymore. I have managed to get it in her eye once on my own, when I was the only one at the house; however, mostly because we have 2 people available most mornings, we haven't attempted to get the process down to only needing one person. I'm sure I could get it in myself at this point, with a few days of practice, and it could become the new system. We will work at this at some point soon, but will wait until there is a need, because we are in a calm place right now where things seem to be working.
I was talking about how we should have taken the time to record the early days of trying to get the contact in M's eye. We should have recorded it just to have the ability to look back and see how much things have changed. I know things have changed, and I know that M is dramatically different when we put her contact in, but it would be a good refresher just to see the difference. The difference is huge! I just didn't think that I wanted to be able to replay that part of our morning over and over, and there didn't really seem time to be recording!
I have posted 2 earlier videos showing how we remove M's contact: contact removal with 2 people and contact removal with 1 person.
We still use 2 people to get it in her eye in the morning. My husband still kind of loosely kneels over her body and pulls on her eye lids opening the eye so I can insert the contact. It usually only takes us 1 try in the morning to get the contact in, and she rarely fights us anymore. I have managed to get it in her eye once on my own, when I was the only one at the house; however, mostly because we have 2 people available most mornings, we haven't attempted to get the process down to only needing one person. I'm sure I could get it in myself at this point, with a few days of practice, and it could become the new system. We will work at this at some point soon, but will wait until there is a need, because we are in a calm place right now where things seem to be working.
I was talking about how we should have taken the time to record the early days of trying to get the contact in M's eye. We should have recorded it just to have the ability to look back and see how much things have changed. I know things have changed, and I know that M is dramatically different when we put her contact in, but it would be a good refresher just to see the difference. The difference is huge! I just didn't think that I wanted to be able to replay that part of our morning over and over, and there didn't really seem time to be recording!
I have posted 2 earlier videos showing how we remove M's contact: contact removal with 2 people and contact removal with 1 person.
Monday 15 April 2013
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!
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!
Thursday 4 April 2013
Contact Removal by 1 Person
This video below shows how we remove M's contact with just 1 person. We still usually use 2 people to insert and remove the contact, but I can now remove it myself with few issues.
Check out this previous post to see removing the contact with 2 people.
Contact removal seems easier than inserting the contact. It has always been faster to get it out than to get the contact in. M has always been less fussy with removal than she was with insertion.
Check out this previous post to see removing the contact with 2 people.
Contact removal seems easier than inserting the contact. It has always been faster to get it out than to get the contact in. M has always been less fussy with removal than she was with insertion.
Wednesday 3 April 2013
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.
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.
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.
Sunday 31 March 2013
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.
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.
Thursday 28 March 2013
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!
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!
Wednesday 27 March 2013
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.
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.
Thursday 14 March 2013
Sunglasses
M sporting the new sunglasses! She's just about used to wearing them, with a few attempts still to rip them off.
Tuesday 12 March 2013
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!
Friday 8 March 2013
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.
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.
Tuesday 5 March 2013
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.
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.
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.
Monday 4 March 2013
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.
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.
Sunday 3 March 2013
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?!
Wednesday 20 February 2013
Learn what you Live!
After we put in M's contact in the morning she usually gets to hold the contact case as a reward.
These days we still have the two of us helping to get her contact in; my husband kind of pins her down and opens her eye while I get the contact ready and put it in her eye. She used to scream during this process, but for the last couple of weeks she has come to realize it's a part of her morning routine. She rarely cries now, and almost never struggles.
Throughout the day, depending on how the day is going, different toys are introduced to her to distract her from trying to pull off her patch or just keep her occupied when she is getting restless. One of these toys is the contact solution bottle.
The other day she happened to have both her contact case and her contact solution bottle at the same time and was demonstrating how to use the two in combination. She repeatedly got her solution bottle facing the right direction and put it to her contact case, just as we would when we fill the case with solution. I had no idea she was watching us do this, or that she would try to copy us, if given the opportunity!
She's almost 1 years old, and has been now exposed to contacts, solutions, and patches for almost 2.5 months now. It's amazing the change that has happened in only these 2.5 months. No more screaming when we try to get the contact in her eye, only rare attempts to rip off her patches currently, and she could now attempt to fill her own contact case with solution!
Another two huge changes: she will come to you and sit on your lap and be super still when you tell her it's time take her patch off, and she will now sit and let you put her patch on in the morning when you tell her it's patch time. These changes in the past 2.5 months, that have gotten us from where we started to where we are now, have made everything and everyone in our house better.
It has come to amaze me how these things have just become a part of her life and our family's lives. It is beginning to feel like 'normal', even though I know when I take her out and about in our community, people don't think we're very 'normal' looking at all!
These days we still have the two of us helping to get her contact in; my husband kind of pins her down and opens her eye while I get the contact ready and put it in her eye. She used to scream during this process, but for the last couple of weeks she has come to realize it's a part of her morning routine. She rarely cries now, and almost never struggles.
Throughout the day, depending on how the day is going, different toys are introduced to her to distract her from trying to pull off her patch or just keep her occupied when she is getting restless. One of these toys is the contact solution bottle.
I'm sure it's not a recommended toy for a 1 year old - I know!
The other day she happened to have both her contact case and her contact solution bottle at the same time and was demonstrating how to use the two in combination. She repeatedly got her solution bottle facing the right direction and put it to her contact case, just as we would when we fill the case with solution. I had no idea she was watching us do this, or that she would try to copy us, if given the opportunity!
She's almost 1 years old, and has been now exposed to contacts, solutions, and patches for almost 2.5 months now. It's amazing the change that has happened in only these 2.5 months. No more screaming when we try to get the contact in her eye, only rare attempts to rip off her patches currently, and she could now attempt to fill her own contact case with solution!
Another two huge changes: she will come to you and sit on your lap and be super still when you tell her it's time take her patch off, and she will now sit and let you put her patch on in the morning when you tell her it's patch time. These changes in the past 2.5 months, that have gotten us from where we started to where we are now, have made everything and everyone in our house better.
It has come to amaze me how these things have just become a part of her life and our family's lives. It is beginning to feel like 'normal', even though I know when I take her out and about in our community, people don't think we're very 'normal' looking at all!
Monday 18 February 2013
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.
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.
Wednesday 13 February 2013
Another Custom Contact
Another custom contact has arrived for M.
We have only done 1 day with it but it seems to fit amazingly!
This new custom is very close to the other ones M has had. However, with a little adjustment, there seems to be little or no wrinkle, the centration seems to be sitting in a better spot over the pupil, and so far (one day) it hasn't fallen out!
This is great news for M! The better the contact fitting, the more she should be able to see and use it to focus, making her vision when she is patched that much better.
We'll have to see how this contact continues to fit, but after this first day we are being boldly optimistic that this could be the one (for now at least)!
So far we've only lost the one custom contact, which means we've only invested $350 in custom lens so far. We almost lost the last custom about 3 times, which led to massive searches throughout our house, however the lens luckily turned up each time.
We have only done 1 day with it but it seems to fit amazingly!
This new custom is very close to the other ones M has had. However, with a little adjustment, there seems to be little or no wrinkle, the centration seems to be sitting in a better spot over the pupil, and so far (one day) it hasn't fallen out!
This is great news for M! The better the contact fitting, the more she should be able to see and use it to focus, making her vision when she is patched that much better.
We'll have to see how this contact continues to fit, but after this first day we are being boldly optimistic that this could be the one (for now at least)!
So far we've only lost the one custom contact, which means we've only invested $350 in custom lens so far. We almost lost the last custom about 3 times, which led to massive searches throughout our house, however the lens luckily turned up each time.
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.
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.
Thursday 7 February 2013
First Time for Arm Immobilizers
M was working at pulling off her patches today for some reason. She managed to rip 3 off today, even though I was watching her pretty closely (at least I thought I was). We have had so many 'good' patching days recently so these arm bands haven't been put to use since they arrived in the mail.
I haven't wanted to use these arm immobilizers with her, but today seemed like one of those days that I should try them, since these are the kind of days that I bought these things for. I only kept them on her for about 10 minutes in total. She was pretty irritated that they were on her, and didn't quite know how to get around with them on.
I haven't wanted to use these arm immobilizers with her, but today seemed like one of those days that I should try them, since these are the kind of days that I bought these things for. I only kept them on her for about 10 minutes in total. She was pretty irritated that they were on her, and didn't quite know how to get around with them on.
This is how she reacted for most of the time they were on!
There were moments that she was distracted by her brother and by my camera strap that made her cry less during this time. I'm hoping that a few times using these things when she's really trying to pull off her patch will make her realize that leaving the patch on is a better alternative to wearing a patch with these arm things!
Moments of distraction and a break in the crying.
Monday 4 February 2013
Surgery Day Part 2 - Congenital Cataract
When I first saw M she had the pink shield over her eye just to protect it from being hit or touched by her. She was hooked up to an IV, and in her little hospital gown. I held her and cried. The tears just streamed out of me while I was holding her even though I knew things had gone as well as could be expected. The anesthesiologist was writing some of her paperwork on the crib bed and saw me crying and kept reassuring me that everything went well and she was fine, but it just didn't make any difference. I wanted to tell her I knew that everything went fine, but I'm crying, and I can't stop, and it doesn't really have much to do with whether or not the surgery was a success or not. It had everything to do with having to leave my baby for so many hours, having to actually have the surgery, worrying about the outcome of vision in the eye, thinking about how we didn't know we'd be doing this 1 week earlier, and not knowing what was going to be happening for her in the next days, weeks, years of her life.
This picture was taken when M was taken from the recovery room, where only I was allowed to see her, into another room where my husband and I could both be with her.
After being in this room for a little bit we were able to get her dressed again in her own clothes. Nurses were in and out to check on her to monitor how she was doing. A nurse took out the IV just before we were able to leave.
We got to take M home after surgery at about 2:30pm. She had nursed a few times, and was generally in good spirits. We were happy to be able to take her home so quickly after surgery, and wanted to just have her back at home so we could all be back in familiar surroundings looking after her.
This picture was taken when M was taken from the recovery room, where only I was allowed to see her, into another room where my husband and I could both be with her.
This is M's first experience with a bottle and she doesn't quite know what to think about it. Although she did figure it out, and thought it was pretty funny! This kept her entertained for a long time in this room.
Now she realizes that bottle just gave her something she's never had before and it's sweet! She is thinking this is all pretty funny at this point.
We got to take M home after surgery at about 2:30pm. She had nursed a few times, and was generally in good spirits. We were happy to be able to take her home so quickly after surgery, and wanted to just have her back at home so we could all be back in familiar surroundings looking after her.
These pictures are when we had M back at our house after surgery.
We had to take M back to the Children's Hospital the next morning at 7:30am for a check. The surgeon was to remove the shield (if it was still on) and check on healing.
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