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!

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.

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.

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.

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.

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.

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.

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.

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.  

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!