Blog Neglect

I have been neglecting this space!  I attempted to write a "1 year" post, that being 1 year after M's surgery date, but it was hard to write.  I've had a partially completed post waiting to be written, and just felt I couldn't write another post if I didn't write that year post.  So for whatever reason, it's hard to write, it's hard to sum up a year of appointments, feelings, and events.  So I give up!  And I'll just move on!

M's congenital cataract surgery was November 23, 2012 and I think I may remember that date for the rest of my life.

I find it kind of sad to look back at how much we struggled just after surgery, how when we first were able to get a contact in and patch her, she was essentially blind and couldn't be put down or left alone.

I look back a year ago, and we have learned so much, dealt with so much, and persevered so much.  There have been ups and downs in the process following her surgery, but considering everything, she has been remarkably good with her patching.

M has been seeing her optometrist and surgeon every 5-6 weeks, and her next appointment is this Friday.

Eye Chart and New Contact

M had an appointment recently and she managed to identify 4 out of the 9 pictures.  She identifies the duck, tractor, house, and puppy (really a teddy bear).  This gets her onto the chart, and gives staff a baseline for her vision numbers.

At our last visit M's eye had changed shaped considerably, and there was concern it could be because of glaucoma development.  She had her eye dialated, and closely examined (she sat motionless for probably 20 minutes) with numerous lights, and tools.  Turns out her eye had physically grown, nothing as a result of glaucoma, and therefore needed a new contact.  The new contact we have is a stronger magnification at this point, and suits her eye shape at this time better than the old one had.

Since she has been wearing this new contact she has appeared more engaged with 'seeing'.  She has been colouring with her eye super close the paper, reading and looking at books up close, and looking at people closely.  They seem happy with this, she's engaging in her vision more with this new contact (like she had with the other contact months ago) and hopefully keeping her brain busy at developing better vision!

Matching Patches

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

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

Hailey got her patch on just like M.

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

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

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

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

Hope I'm Not Jinxing It...

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

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

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

Funny Little Images

M had an appointment about 2 weeks ago at her surgeon's office, and with her optometrist.  It's taken me a while to write a post about it, well because it was just another normal appointment.  Things looks maybe better or the same, at least not worse, and keep patching full days everyday.  It's hard to remember that going and having a non-eventful appointment is good news.  Things just keep on going, and we keep patching, and hope for the best in the end of all this.  

One very exciting moment was the mention of this eye chart.  They gave me a copy of the images they use to get her 'on the chart', for a more objective way to measure her vision development. 

She's 1.5 years old, and they suggested a little young usually for being expected to identify or recognize these images, but she was so chatty and interactive at her appointment they suggested I start familiarizing her with the images.  If M and I can sit in the big chair, and they flash these pictures up on the screen, and if she can somehow communicate to me the image that she is seeing!  Well, I would cry.  I'd be that crazy crying lady, who is sitting in a chair with her 1.5 year old, crying because she said 'tractor' when/if she could see that jeep looking thing.  And just to be open about the whole thing - I've only cried in that office once!  After they had done all her exams, and the surgeon met with us to tell us she had the cataract and we needed to start planning her surgery date.  Sure I've cried lots of other places throughout this whole thing, but only once in that office!   

So we've had these images for about 2 weeks and I have yet to get M practicing them...  Our last 2 weeks have been occupied with me going back to work, E starting school for the first time, and M starting daycare.  So we've been busy.  Plus I have to get the images made into fun little cards, magnets for my fridge, and figure out the signs I'll teach her to go along with each image - cause these days most words sound like tractor!

A rotary phone?!  Hilarious image to use right?!  

Off she goes...

M is starting daycare regularly September 3.  We have a few visits before our daycare is really needed, to get everyone ready for this transition.  I wrote daycare a little letter to help them better understand this part of M's life.

Dear Daycare,

I was born February 28, 2012.

I had cataract eye surgery on my right eye November 23, 2012 just before I turned 9 months old.  They removed the lens of my right eye, so now I have to wear a contact that my mom and dad put in every morning when I wake up and take out before I go to bed. 

Since I didn’t have surgery until I was 9 months old I have to work really hard at patching in hopes that I develop vision in my right eye.  If I didn’t have the surgery I would have been blind in that eye.  So I patch all day everyday, no matter what.  All day means all hours of the day that I am awake, except maybe an hour in total.  That’s usually in the morning before I get my patch on, and a little before bed when my parents take off the patch.  

I’m pretty good at wearing my patch.  Sometimes I try to take it off, but my mom says ‘No Maggie, leave your patch on’.  I listen most of the time.  Sometimes if I’m left alone in my crib, or get angry I’ll rip it off even when she tells me not to.  My patch is kind of easy to put on.  My parents always put a little layer of Cavilon cream around my left eye where the patch adhesive touches before the patch goes on.  This helps the patch come off without ripping my skin.  I usually have to lie down to get my patch on, and most of the time I don’t want them to put it on.  But as soon as it’s on, I deal with it and go on my way with few issues.

When I am wearing my patch it’s much more difficult for me to see.  I have no depth perception which means I trip and fall a lot.  Sometimes my mom helps and says ‘Maggie step’ if I’m walking and getting close to a change in heights in the ground.  This helps me in new places, but once I get used to a place she doesn’t need to tell me much.  I also bonk my head and body a lot because I can’t see as much around me as other kids my age.  My mom will say ‘Maggie head’ and I’m usually pretty good to slow down and figure out what’s going to hurt my head. 

My mom wears contacts to help her see but they aren’t quite the same as mine.  My contact only makes my vision clear within the first few feet of me.  If I really want to see something and examine it, I will get my head and eye very close to it.  Sometimes I get close to people too to take a good look at them.  I rely a lot on sound to know where to go, and sometimes I can get lost, and not know which direction I should be going.  Because my contact makes my vision really clear close up I am also pretty busy!  If there are lots of things going on, I want to see it all, so I am busy going back and forth to things so that I can see what is going on. 

My mom has also been working at teaching me to stop and say ‘eye’ when my contact is bothering me.  Sometimes I will stop, say ‘eye’ if there is something in my eye, or if my contact has fallen out.  As soon as I say ‘eye’, if I stop playing suddenly, or if I rub my eye, my mom checks my eye.  She also checks my eye about 100 other times during the day just to make sure the contact is still in there.  My contact costs $175 and she tells me that’s a lot of money – I tell her it’s all relative!

My mom also packed me my contact bag – she takes it everywhere we go!  It’s just a Ziploc full of things that help me: contact solution, eye drops, Cavilon cream, and extra patches.  If ever she has to make a choice between a diaper bag and the contact bag, she always chooses the contact bag.

If my contact falls out when I’m playing, just tell me not to move while you look for it.  A lot of times it’s just coming out of my eye, on my clothes, or just below on the ground.  Take a look for it, but don’t obsess over finding it.  My mother obsesses over finding it, and it’s annoying for me.  When it falls out, and if you find it, just fill up the contact case with solution and put the contact in, and close up the case.  Make sure to take off my patch right away, because without my contact I can’t see anything when I’m wearing the patch.

If you take my patch off, tell me ‘Maggie I’m going to take your patch off’.  I sit super still for this because I love getting my patch off!  If I sit on your lap you can peel the patch off starting at my nose and peeling outward.  If you press on the skin near where you are peeling it helps to not pull on my skin or tear my skin which can then bleed.  My parents always cheer for me when I get my patch off and tell me I’m such a good girl!  They usually let me hold my patch when it comes off for a while – I carry it around like a trophy.  Mom told me I probably won’t be allowed to do that at daycare which will be ok I’m sure, plus she told me I’m supposed to be wearing my patch all day at daycare anyways!

My parents are mostly over it.  Sometimes they still get upset when people ask ‘what’s wrong with her’ or ‘what happened to her’, instead of commenting about me or how cool my patches are.

Eventually (or sooner), you will get used to my patch and contact, and you will start to forget I even wear a patch!  I’m like the coolest and cutest little girl, and I sport a patch!  

Oh, The Places You'll Go!

There's the book "Oh, The Places You'll Go!" by Dr. Suess.  I have read this book so many times, have heard people read this book aloud numerous times, and have heard it integrated into speeches at a variety of occasions over the past several years.  I have just recently reread this book and it takes on a different perspective now having gone through the past 7 months with M.

Here's an excerpt of my new found passages that have taken on new meaning for me, my little girl, and a life after congenital cataract surgery.

You won't lag behind, because you'll have the speed.

You'll pass the whole gang and you'll soon take the lead.

Wherever you fly, you'll be best of the best.

Wherever you go, you will top all the rest.

(This is what I think and feel most days when I think about M and her cataract!)

I'm sorry to say so

but, sadly it's true

that Bang-ups

and Hang-ups

can happen to you.

You can get all hung up

in a prickle-ly perch.

And your gang will fly on.

You'll be left in a Lurch.

(Congenital cataract diagnosis at 9 months old.)

You'll come down from the Lurch

with an unpleasant bump.

And the chances are, then

that you'll be in a Slump.

And when you're in a Slump,

you're not in for much fun.

Un-slumping yourself is not easily done.

(This is describing our post-surgery days...)

The Waiting Place...

for people just waiting.

Everyone is just waiting.

(Waiting and waiting, and hoping for patching to be working and make it all worth it in the end - we wait, we wait and see.)

NO!

That's not for you!

Somehow you'll escape all that waiting and staying.

You'll find the bright places

where Boom Bands are playing.

With banner flip-flapping

once more you'll ride high!

Ready for anything under the sky.

Ready because you're that kind of guy!

And will you succeed?

Yes!  You will, indeed!

(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

(This is what I hope for her future!)