Eye Update

It's been awhile that I've written about "the eye".  Mostly because there hasn't been much news. Thankfully.
We got the OK in June to travel for 6 weeks this summer which was great! We then had an appointment when we returned in August.  It was the longest we've gone between visits.  Just over 2 months.  Needless to say I was horribly nervous.
Nicole was not a fan of any of the testing or examinations that day.  The older she is getting the harder it is getting to get her to cooperate.  But with a looooooootttttttt of perseverance we got some reliable pressure numbers...and they were great! Sooooooo...we got the OK to stop her morning drops! Woohoo! It was so time consuming I was getting stressed about how I would manage when I went back to work.  There were 3 drops which required waiting 5 mins between each, then 15 mins before we could put the contact in.  I didn't know how I would find that extra half hour before 6 am to get it all in.  So we decided to try and stop the morning drops and then have the pressure checked 2 weeks later.  Nicole was then booked for a Sedation appointment.  Ugh.

This brings us to today.  The dreaded Sedation appointment.  It sucked the last 2 times we did it and it sucked today.  In fact, it has only gotten worse.  The older she is the worse it seems.  We had to stop formula at 2:30am and clear fluids at 5:30am.  So, after finally having Nicole sleep a couple nights through I had to set my alarm for 2am and 5am to make sure she got some food in.  Then we were up early for the drive downtown. 
The appointment was pretty close to on time.  Thank God.  Nothing like a hungry infant.  Then the fun begins.  I am told I need to put the contact in.  Ugh.  I get it in on the first go.  Thank goodness.  Then it's time for the relentless vision tests.  Is there really any point to try them on an infant?  Really? How reliable are they when at the last appointment Nicole refused to follow a light but kept her eye on that Timbit something fierce.  Really.  It was hilarious.  The resident would show my hubby where to hold the donut.  LOL.  Nicole screamed and screamed when they put a piece of crappy tape across her strong eye.  She didn't look at any of the silly boards.  Then they ripped the crappy piece of tape of her eye and stuck it on her weak eye.  That made her even angrier.  More screaming.  I get a text from my hubby who is in the waiting room with our toddler asking me what's up cause he can hear her. 
OK back to the Sedation room.  Drop time.  More screaming.  Go for a break for 5 mins and come back for more drops.  More screaming.  Who's having fun?
Then...time for the sedation.  Nothing like force feeding an infant medication.  The screaming, the gurgling, the look of terror.  Yup, makes a mom feel wonderful.  Oh it's always worse for the mom, the nurse tells me...yup I sure hope so.  Thankfully, after a few repeats of the alphabet song she was asleep.
Enter Dr. T.  I love her.  We are so lucky to have her.  She is so kind and compassionate even though I know she is so overwhelmed with patients.  The examination went well.  The pressures are good.  Higher in her weak eye but that is to be expected since her cornea is thicker.  Or so I'm told.  So that's great news.  Nicole's eye has grown which means a new contact.  Ka-ching Ka-ching.  We were expecting it and truthfully  needed a new lens.  Those Silsofts don't last us more than 2 months before it begins to get yucky and irritating for Nicole.  All in all it was all good.  Poor Dr. T.  She must think I'm on the edge cause she preceded to tell me how great parents we are and how much good we are doing for Nicole.  She gave me a hug on the way out.  Did I mention how wonderful she is???
Of course...patching came up.  We are doing 3 hours a day.  I asked her about the days when we just can't cause we have to do something or go somewhere etc.  She said it was OK.  We still had to live our lives.  Just try to do more on another day.  I also had a great chuckle with the nurse about the Patching poster at the clinic.  I should've taken a picture of it.  I will try next time.  It had the wonderful smiling children patched.  Yeah right.
Anyhow, that was the examination.  We then slowly woke her up and gave her some apple juice.  Once she was fully awake and keeping down juice we were on our way.  Time for more fun.  The one thing that didn't happen in Nicole's other sedation appointments....she woke up drunk.  For real.  She was smiling and cooing and babbling.  I put her in the stroller to meet up with my hubby and Lilia and she was making all sorts of funny sounds.  Drew a lot of attention.  She didn't know what she wanted.  She was like jelly in our arms.  She wanted up then down then up then down.  She couldn't stand she was so wobbly but couldn't sit still.  It was horrible.  We went to have lunch until some of it passed cause we were worried about the car ride home.  Thankfully it didn't last too long and she slept the whole way home.
And there you have it.  Yet another appointment done.  We are booked for another...wait for it...sedation in 3 months time.  We will drop 2 evening drops 2 weeks before that appointment and fingers crossed everything will go well.  I guess these appointments are a necessary evil and I'm definitely far from happy.  But this is what Nicole needs so we trudge through it.  My only saving grace is that she won't remember these moments.
I only hope that I forget them too.