Getting Close to Reducing...

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

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

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

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

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

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

Practicing

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

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

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

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

Taking Out Her Own Contact

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

Any guesses?!

She can take out her own contact!!

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

The New Contact

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

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

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

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

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

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

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

Contact Prescription Change

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

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

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

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

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

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.

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.

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.

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!

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...

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.

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.

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.

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!

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.

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!

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.

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.

Still Working on Contact Fitting...

M has now had 3 custom contacts ordered.  The first wasn't right at all, the second was close, and the third seemed to be the closest.  The second and third custom contacts both had wrinkles in the outer edge of the contact, and the centration (middle focusing part) seemed to sit low on her pupil.

I kept M wearing the third custom the most, even though it would fall out now and then.  I thought this one fit on her eye the best and thought she might be able to focus and see with this one the best.  Although, I pushed our luck, and this one fell out of her eye and we lost it.

After losing this third custom lens, I went back to the second custom again.  This time it seemed to fit better and sat higher on her pupil.  Although after having not worn it for a week, this contact which had NEVER fallen out of M's eye, fell out 4 times in 5 days.  I had been using tear drops throughout the day, but it didn't really seem to matter.  So far we have been able to see it falling out, or notice when it falls out right away.

M saw her optometrist and he examined this contact in her eye again.  He has ordered a slightly larger diameter for the contact, and increased the magnification of the lens slightly.  He's hoping this one might fit better at this point.

Finding a fit for the contact seems to be somewhat trial and error.  We have had 3 custom contacts and each one ordered seems to get closer to fitting better than the one before.  One of the major criteria for success with these contacts is that they don't fall out of her eye, and then adjustments get made to try to get the correct magnification and proper position on her pupil.

Here's the hoping the 4th custom is a keeper!

Lost - One Custom Contact

Today we lost a custom contact somewhere in our house.  It fell out of M's eye.  Everyone in our house searched on their hands and knees around most of the house looking for a small clear contact - or a shriveled up piece of plastic.  We found lots of other things, but no contact.  $175 added to my floor grime...

But the good news is M came and told us by crying and wanting up when we think it fell out!  So she notices a difference between having it in when she's patched, and not having it in when she's patched!  And this is the first custom we've lost so far (trying to add to the positive side)...

The First Few Contacts

The first contact we got for M was a disposable one.  Her optometrist gave us 2 for free at our first appointment.  I was prepared to start paying for them right away, but was told to take the 'freebies' while we had the opportunity.

The first 2 disposables we got were easy to get in her eye, however, fell out of her eye regularly.  The first time it fell out I had her at the pool and it fell onto the pool deck.  Thinking that this was a rarity I just threw it in the garbage!  Little did I know I would kill to have that contact back no matter where it fell - throwing it in the garbage wasn't such a smart idea...

The second disposable we got at that first appointment also kept falling out of her eye.  It was almost as if they flew out.  She wasn't rubbing her eyes, and her eyes didn't seem too dry.  I would leave her somewhere in the house for a few minutes, and would realize she had lost the thing.  I spent so much time looking in and examining her eye, trying to figure out if the contact was still in there.  Also spent a lot of time tearing through the house to try and find any shriveled up contact remains.

As it became apparent that the disposables weren't going to stay in her eye, the optometrist decided to order a custom lens.  These lens were not to be thrown out!  They cost $175 each.  The first one we got was too small for her eye.  It was harder to get in her eye because the actual contact diameter was smaller, and the contact was stiffer when bending it to get in her eye.  It went in fine but kept floating to the outside corner of her eye and getting stuck there.  I had to manually move it back over her pupil and iris repeatedly and constantly use moisturizing drops.  This contact wasn't working.  We were told to stop using it and go back to the disposables until the next custom contact arrived.

Custom contact bottles

The second custom that arrived didn't cost us anything.  We just had to return the first custom we had, and exchange it for the new custom.  There seems to be a return and exchange program.  So as long as we don't lose the 1 custom contact we paid for, we won't have to pay for the next as we are fitting them.  The  second one worked pretty well.  It generally stayed where it should, and never fell out!  It was a huge feeling of relief not to have to be constantly worried about it!  However, the outer part of the contact appeared to have a wrinkle in it when M would wear it, and the centration (magnified circle in the middle) was sitting lower on her pupil.  The optometrist looked at it in her eye, and ordered another custom lens that was slightly different than this one.

This 3rd custom contact that we received still has the same wrinkle around the outer edge of the contact, and the centration is still lower on her pupil than it should be.  We've been wearing this one the majority of the time now.  It has fallen out twice so far, but generally you can see when it is going to happen and prepare!  The wrinkle seems smaller, and the centration seems to be a bit higher on her pupil, but still has it's problems.

We are still working to find something that doesn't wrinkle, sits higher over her pupil, and doesn't fall out.  Meeting those 3 criteria seems to be more difficult than one would think.