Happy Halloween!

Today was a total pick me up! We decided against lens and patching today since we just wanted to enjoy the day without worrying about whether it was in or not. 
The day started with playgroup for Lilia where all the kids dressed up and exchanged treats.  Is there anything cuter than 2 and 3 year old in costume! Priceless.
When we got home at 11:30am we had a mini get together with some of my girlfriends.  Lots of little ones and yummy food.  My wonderful hubby made us breakfast for lunch.  Does it get better??
Oh yes it does!!
Taking the kids out for trick or treating rounded out our day.  Nicole was very tired and was pretty much out of the game at the get go.  Then she took a header into the pavement and it was over from there.  And we hadn't even left the street yet.  LOL.
Lilia on the other hand was in her element.  She's been asking for weeks if it was Halloween.  We only visited the homes of people we knew and even with that she was asleep in the wagon before we got home.
We are all wiped out but in a much better place.  Especially since one of the treats Nicole got was money to go towards a contact lens!!  Aren't we lucky!?
Hope everyone had a wonderful day and a safe evening!

Oct 31 - Going out with the neighbors.  And tired of picture taking. LOL

Ugh.

I.hate.contact.lenses.
Period.
We have set a record.
Lens lasted 12 days before it got rubbed out again.
I am feeling frustrated and down.
I am so very tired of looking for the impossible.
Sigh.
And if one more non-contact lens inserting into infant parent asks me how come I keep losing them I think I will explode.
That's all.
Guess I'll be putting in another call to the optical place.
Thankfully we have a spare right now.  Although I don't feel like doing any of it tomorrow.
But tomorrow is a new day.

Project 365 - Week 42

Oh....this is getting hard....but I've come so far...it's like seeing the finish line in a marathon. LOL.

Oct 15 - My Picasso

Oct 16 - Heading into the corn maze at Whittamore's Farm

Oct 17 - Leftovers for Dinner...anyone know why my homemade mac and cheese is always grainy??

Oct 18 - Family photo time

Oct 19 - Caught in the act.

Oct 20 - I told her she could share my bed tonight.  So much for sharing.

Oct 21 - Finally taking off on her own.

Ladies and Gentlemen...We have a walker!!!

Please excuse the outfit. LOL.  Nicole had a milk incident and we caught this video before she got changed.  Oh and please excuse my hubby's cackling laugh.  It truly is more endearing in person.  =)
Here it is...Nicole's first walk down the hallway!!

One Year Ago

October 20, 2010
The day it all changed.
I will never forget that day.

The day before we had gone to the Pumpkin farm.  We had planned for the mall for the next day.  Family time with our 20 month old and 2 week old.
God had other plans.
We found ourselves instead at the doors of the Emergency Room at The Hospital for Sick Children.
A place no parent wants to find themselves.
A place I had been to many times for work as a summer student at a research lab.  Then in clinical rotations for my studies as a Respiratory Therapist.
Never did I imagine I would be crossing the threshold with my own child.
And there I found myself.
With my 2 week old infant.  With the white spot in her eye.
That is were a Resident sat next to me and asked me of I knew what Retinoblastoma was.
It crushed my world.
Thankfully, I never had to learn more about it.
Instead, by the end of a looooooooong day I learned my baby girl had a cataract.  Caused by PHPV.
Surgery. Contacts. Patching.  I was in overload.
I remember sitting in that waiting room at the Eye Clinic.  Our very first visit.  I had no idea how well we would get to know that place.
I remember the tears that followed.  For days. For weeks.  For months.
I never thought we would get through it.
But we did.
Thanks to my wonderful hubby and all of my fellow eye moms.   No one understands like you.  No one can offer support like you.
Thank you to all of you.  To those that I've met and feel like old friends.  And to those I haven't but wish I could.
You are all heaven sent.  You really are.

Many, many, many visits later to the Eye Clinic and it feels comfortable now. 
Now I look at the other moms in tears and wish I could tell them it was going to be OK.
I know we have a long long road ahead of us, but I also know we have come so very far.
We had no idea what to expect.
But here we are.  A year later.  A stronger family.  A stronger parent than I ever thought I could be.
Funny what love does.
We love that little girl so very much and there is nothing we wouldn't do for her.
Even if it makes her angry now. 
I pray one day she understands.  I think she will.
She knows we love her and that all we do for her is because of that.
And I have faith that it will all pay off.

My beautiful,  brave Pumpkin!

Project 365 - Week 41

Oct 8 - Starting the production line for Nicole's birthday party.

Oct 9 - Nicole's birthday party! Cupcakes anyone?

Oct 10 - I can't believe it's this warm so late in the season...but I love it!

Oct 11 - Nicole got this cute coat from her cousins.  Thing is I had to hide it cause she wouldn't let me take it off!

Oct 12 - Getting caught in the rain.

Oct 13 - Lilia's quiet time.

Oct 14 - Heaven.  =) Two sleeping kids while Mom's inside shopping.

Having a break.

So, it's official.  Another contact lens gone.  When does it get less annoying and frustrating?? Patching was rough this week.  Nicole had lots of visitors on the weekend so we gave her a break from the patching.  Then she fell sick again.  It was short, thankfully.  So we were back on track Thursday.  Then Friday came.  She'd been kinda rubbing her eye more than usual so before going out we did a lens check and then decided to put some wetting drops in.  We went to the grocery store where there is a photo studio and had some photos taken.  As we were leaving...lens check resulted in....no lens.  Ugh.  We have no idea where we lost it.  Anywhere between her change table and the photo place.  We tried our hardest to find it at home but it just wasn't gonna happen.  I am kinda frustrated because the only other time we lost a lens I had put drops in too.  I guess that's not completely true.  It has been rubbed out a few times but we've always found it.  The only two times it got lost for good I put wetting drops in.  And those were the only times I used wetting drops.  Coincidence? I have no idea.  I hope so cause I would hate to think I was the cause of having to drop another large amount of money.  Sigh. 
Like I said we lost the lens on Friday and had already planned on hitting Sick Kids Hospital on Saturday to pick up Nicole's prescriptions.  (She's still on Diamox which is not readily found at any pharmacy so we have to go downtown to get it.)
Soooo, she, the lucky duck got a break from patching.  No big deal.  Except....we called on Saturday morning just to double check they had her lens in stock...and...closed for the weekend.  Ugh.
This meant no lens and no patching all weekend or today. 

I.feel.so.guilty.

I hate it.  I mean, we had a wonderful weekend...we went to the library and the mall and a pumpkin patch and visited with friends and their new baby.
And all this without having to rush home to patch or worry about when she was gonna get her hours in.
BUT.
I had that nagging feeling.  You know, that nagging feeling that I wasn't doing something I should be.
And it made me sad.  It made me sad that I still had the worry even though we couldn't patch.

And the feeling of normalcy we had this weekend made me sad. And jealous.
My fellow "eye" moms know what I mean.
I hated all the moms at the farm.  They didn't have my problem.  And really how do I know they don't have worse problems? Or that they wouldn't trade spots with me for an instant? We look happy and stress free.  No one would really guess by looking at us how much we've been through. 
Nevertheless I know for the most part those moms are not dealing with things like pinning their child down every morning to put a lens in or trying to get patching hours in or strapping their kids down for sedations or handing them off for Exams Under Anaesthesia or doing numerous drops every night or checking obsessively for lenses or....well you get the idea.

And I am so very jealous.

The contact and patching and glaucoma has sadly become our normal.
But it could be so different.
This weekend I sat on the floor and watched TV while my kids played.  I didn't have to chase a one year old and cuddle her and encourage her to keep busy to keep her from screaming and tearing her patch off.
I could leave the room because I knew there was no lens in place to be rubbed out while she was out of my sight for a moment.
No lens checks.
I wouldn't trade my girls or my family for the world.
But I wish I could make things easier.
I wish I could make them easier for Nicole.  I wish she didn't have to bear this burden.
I wish I could make things easier for Lilia.  I wish I could give her my full attention at more times throughout the day instead of focusing on patching.  I wish I wasn't so short with her when she's just being a demanding toddler during her sister's patch time.  I wish I could fulfill all her needs in those 3 hours.
I wish I could make things easier for my hubby.  I know it makes him sad and frustrated to see me stressed.  I know we are sometimes short with each other when it's been one of those days.
But I guess every family has a cross to bear.  This just happens to be ours.
We are doing the best we can and if I do say so myself I am proud of us all.
We've been given some pretty sour lemons but are making some very yummy lemonade =)
And tomorrow...it's back to a fresh lens and patch time.
And we will have a good day.

Project 365 - Week 40

Oct 1 - Nicole seems to think this is a great place for her nap.

Oct 2 - Nicole got a birthday cookie when we went to celebrate her cousin's bday

Oct 3 - FINALLY!! Brushing her own teeth...sorta.

Oct 4 - My biggest pet peeve.  Not finding all the pieces to something at the end of the day. LOL

Oct 5 - How fast a year goes by!

Oct 6 - My new iphone app.  Instagram.  Fun.  Everyone got a ride today it looks like. =)

Oct 7 - You won't be the youngest on the street anymore Nicole! New baby coming soon!
 NOT FROM ME THOUGH! LOL

Project 365 - Week 39

Sept 24 - Yeah Baba is back from her vacation.  Makes bathing two kids easier.

Sept 25 - Aww, two sleeping kids.  Dilemma...do we leave or transfer? We usually leave and have a nap in the car too!

Sept 26 - Finally a kinda windy day so Lilia can fly her first kite.

Sept 27 - Patching is getting more tolerable for Nicole.  Thank Heavens.

Sept 28 - Trial run for Nicole's birthday cake

Sept 30 - You are so weird, Dad.

Happy Birthday Baby Girl!!

Today my baby girl Nicole turned one!!! That's right...an entire year has passed!  And what a crazy year it has been.  My brave and beautiful little girl has been through so much.  I looked back through my little healthpod (best investment ever!) and realized she has had 22 visits to the Eye Clinic at the Hospital for Sick Children.  She has had three appointments under sedations.  She has had three visits to the operating room.  Who knew one little tiny cataract would cause so much fuss.  We got through it though and although many tears were shed we look back and have had many wonderful memories too.

Nicole had a wonderful day.  Although she still had to patch!

Really, Mom? I have to patch today!?

Yeah! The patch is off!!

Happy Birthday, Princess.  I love you so very much!