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!)

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?

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...

Pears

My Busy Little One...

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

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

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

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

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

Goofy Kid with a Patch