Wednesday, September 28, 2011

Project 365 - Week 38


Sept 17 - Baking with her Auntie

Sept 18 - Hanging out

Sept 19 - I was trying to get a picture of her "recipe" in the bowl...she was pretending to be the Creeper from Scooby Doo

Sept 20 - Thank you ants for ruining our roof!

Sept 21 - First day of her first ever fever

Sept 22 - Nicole's (and my) best friends right now

Sept 23 - Looks like we'll be getting new neighbors.

Saturday, September 24, 2011

Scare

In the last post I wrote about how Nicole had a fever.  She had it for 3 days and half way through the fourth day it broke.  That was yesterday.  She woke up from her nap a new baby.  She played normally and tumbled normally.  She is getting more courageous.  She cruises the couch and yesterday let go.  But then fell backwards and bumped her head.  Nothing more or less than the usual baby tumble.  I didn't think much of it. 
Fast forward to this morning.
She woke up normally.  She had breakfast normally.  Just as she was finishing her last bite of cereal she looked up and I caught the sight of blood...in her eye...in her good eye.  I nearly fainted.  I tried to get a good look.  Yup blood.  Under the iris.  Of her good eye! My hubby just got home from night shift so I was torn whether to wake him. But I had to.  He had mixed feelings about what to do about it but of course as her mom I didn't want to regret not having it looked at.  I mean if she had two strong eyes I wouldn't have thought twice about it.  But man does the world change when vision isn't 20/20. 
I called the Ophthalmologist Resident on call at the Eye Clinic.  It was 7:30am on a Saturday.  I was starting to feel like "that" mom.  She took my story and said it sounded like a burst blood vessel.  Did she have some trauma? Nope.  Oh yes.  She had fallen and bumped her little head the night before.  Sigh of relief.  Probably a result of that.  She would call me back.  My hubby went back to sleep.
Fast forward 2 hours.  About 10 minutes after Nicole fell asleep for her nap the Resident called back.  She said that given there had been some trauma  (Trauma? why in the world did she keep using that word!) she would like to have a look at her eye and make sure everything is OK.  She said she was between cases and heading to the OR, could I come now.  Now? Nicole was napping and in her PJ's.  My hubby was sleeping.  I was a disaster.  I said we could be there in an hour. Perfect.
So poor hubby got up and Nicole went downtown in her PJ's.  LOL.  That's OK.  I would've if I could have.
The Eye Clinic was locked up when we got there, but the Resident was waiting.  Kinda spooky.  I am so used to the place buzzing with people.  Nicole was her typical "I don't want anyone touching my eye or even thinking about touching my eye" self.  We pinned her, put drops in her, and then pinned her again so the Doc could take a look.  Everything looked great.  Thank Heavens.
The Doc was awesome and totally didn't make me feel like I overreacted.   She said that it could be caused from coughing, crying, or the bump on the head. Whatever it is there was no bleeding in her eye.   Her good eye. So very scary.
I feel so much better for having it checked out. 
Thank goodness for our Eye Clinic!!

Friday, September 23, 2011

A break from patching...

Nicole is sick.  She's had a fever for the past three days.  Needless to say I have not burdened her with either the contact lens or patching.
But why do I feel guilty about it?  Instead of just worrying about her getting better I am also worrying about all the missed patching.
I hate patching...even when we aren't doing it.

Monday, September 19, 2011

Project 365 - Week 37

Sept 10 - Peek a boo

Sept 11 - MS Rona Bike Ride.  Almost $2300 raised. Thank you everyone!

Sept 12 - Trying to get a picture of three monkeys is impossible!

Sept 13 - Hanging at SickKids Playplace.  She didn't want to leave. LOL.

Sept 14 - She was very quiet in her room.  I found her "painting" her nails with markers.

Sept 15 - Doesn't everyone eat ice cream this way?

Sept 16 - Very exhausting week.

Thursday, September 15, 2011

An MS Update

Too many doctor appointments this week.  That's all I have to say.  Wednesday was Nicole's appointment.  Today was mine with my neurologist.  Thankfully, nothing too much to say.  Dr. O. says I'm doing good.  Only one major relapse four years ago.  He did all the funny reflex tests.  Follow my finger, push up on my arm, blah blah blah.  Oh yeah and the vision test.  20/800 in my left eye.  20/20 in the right.  I hate it.  It scares me.  It's like waiting for the day that I lose vision in my good eye.  It's crazy.  So crazy that I don't think about it at all except for the once a year that I visit the neurologist.
I have had some other little things creep up but they are most likely exasberated  by sleep deprivation.  
Plan is to continue on my injections.  Oh and have another MRI.  I kinda dread it.  I am sure the disease has progressed regardless of my symptoms but I don't want to know.  What difference does it really make?  All it will tell me is that I'm a ticking timebomb for the next relapse.  Who wants to live like that?
Oh yes.  And I had a bloodtest looking for antibodies to a specific virus.  It helps him determine what course of treatment I would need in the future.  Lovely.  I was hoping I wouldn't need anything? Naive? I guess so.
Anyhow that was the appointment.  Nicole appears to be teething and is absolutely not taking it well.  She screamed for most of the drive home.  Advil helped immensely.
I don't want to sound like it wasn't a good day.  It most certainly was.  We got Burrito Boyz for lunch.  Yum Yum.  I've been craving it since forever.  Even the cheese quesadilla was a hit with the girls.  Thank goodness we didn't need to stop for chicken nuggets!
Check out how crazy busy it was! You know it's good when we waited in that line!

Tuesday, September 13, 2011

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.

Sunday, September 11, 2011

Project 365 - Week 36

Wow, I can't believe how quickly time is ticking away.  Every night I mean to sit and update on Nicole but every night I barely get everything done before I am fast asleep.  Today we spent the day outdoors for the MS Biketour.  It started off cool so I dressed up everyone warm.  Only thing...it warmed up...fast.  And I had no sunscreen.  Ugh.  Lilia spent 6 weeks in Croatia without getting pink.  One September day here and she's got too much sun.  I love September but I hate the swings in weather here.  Fleece one day and tank tops the next.  Heck, today it was both in one day! Hope everyone enjoyed their weekend!

Sept 3 - More puddles.  This time she decided the mud was fun too. Ugh.


Sept 4 - Baked Zucchini sticks with yummy dipping sauce. Yummy Dinner.

Sept 5 - Nicole's first ride in the wagon.

Sept 6 - Hanging at the mall with friends.

Sept 7 - Burning off some energy at the park.  Lilia not Daddy. LOL.

Sept 8 - A walk in the park and a picnic with more friends.

Sept 9 - A visit to Crumbs and CO.  Lilia got put to work. =)

Sept 9 - This day deserves two pictures it was so much fun! A visit to work!

Wednesday, September 7, 2011

Project 365 - Week 35

Aug 27 - Giggles with Daddy

Aug 28 - First time in the shopping cart together.  It obviously went swimmingly. LOL

Aug 29 - She took a few nervous steps on her own!!

Aug 30 - Enjoying one of the last sunny, warm summer days here.

Aug 31 - Taking a break outside

Sept 1 - Making yummy veal rolls.  Recipe c/o of my 92 yr old grandma

Sept 2 - Look closely.  I left it too close to our gas element. Boom. Not good. 
 Singed my arm hairs and top of my head.  Lesson learned.

Sunday, September 4, 2011

I think I give up.

Ok it's like 2 days into this initiative and I think I give up. LOL.  Go ahead, which one of you called it? Today was a rough day with an almost 3 year old and an 11 month old.  Wow.  Add patching to it and it's just verging on unbearable.  Nicole has decided that she doesn't need to nap and has dropped one. Today she had a one hour morning nap. Lilia has dropped all her naps most days (although she still needs it).  That means in the 14 hours that my hubby was gone at work I got one hour without the baby but still with Lilia to make dinner, do dishes, laundry and feed her.  Yeah.  It didn't go so well.  Nicole was asleep before 7pm.  Lilia made it till 9pm.  Thank goodness for the slow cooker!  Does anyone have any good slowcooker recipes? I'd love to try them!
Now it's time to hit the sack. 

Saturday, September 3, 2011

Return to Project 365 - Weeks 33 and 34

My it's been awhile.  Using a DSLR camera is hardly practical with little ones and we unfortunately left our camera at our layover in Dusseldorf.  Thankfully all the pictures had been uploaded and the camera was on it's last legs.  We are now the proud owners of a new point and shoot which makes taking pics on the go a lot easier!  So I hope that I can actually see this project to the end!

Aug 13 - Family photo on our last day in Dubrovnik

Aug 14 - All smiles at the start of our second flight.  8 more hours to go.

Aug 15 - Yup, my hubby was not joking when he said he was going to pack the walker

Aug 16 - Another great garagesale find by Uncle Joe.  Working lights and sirens too!

Aug 17 - My hubby is awesome.  He brought cupcakes home to his jetlagged wife.  I love him!

Aug 18 - Babygate time again!

Aug 19 - Yup, Christmas items for sale at Costco in August! Crazy.

Aug 20 - A gift from her buddy.  Now she's a true princess.

Aug 21 - Potty training accident.  Lilia not my hubby. LOL

Aug 22 - Don't bother with Mum Mums, I want buns!

Aug 23 - Awesome.  Was half price at the toystore.

Aug 24 - Visit to SickKids today.  Lilia loved Ben.
  He's rubbing his belly cause she just told him she had chicken nuggets for lunch. LOL

Aug 25 - I offered her baby cereal.  She wanted the same thing her sister was having.  Eggos!

Aug 26 - Visit from her future boyfriend =)

Friday, September 2, 2011

Return...to sleep.

It's 6:36am and Nicole is ready to go.   So I am up.  But all I want to do is return back to sleep.  Ugh.  It's gonna be a long day.

Thursday, September 1, 2011

September 1

Well, it certainly has been awhile.  For more than one reason.  First, travelling home from Europe with two little ones drains you.  Being home alone with them while all of us are jetlagged drained me even more.  All free time was taken up by laundry, cleaning, catching up on sleep.  You will be pleased to know that Project 365 is still on track.  Hit a couple of bumps including a laptop on the fritz, an old computer that moves slower than a snail and we may or may not have left a camera in Dusseldorf during a layover.  Nevertheless the point and shoot has now been replaced and we are no longer relying on iphone photos. LOL.
I also lost a little motivation to write.  Not sure why.  Maybe cause we've settled into a bit of normalcy and normalcy just seems boring doesn't it? Don't get me wrong...we are definitely enjoying the lack of excitement.  It just seems that I have so many things I want to do that blogging seems to take a backseat.  Blankets to finish crocheting, first year photobooks to make, emails to return, the list goes on.  Don't get me wrong.  I am definitely READING all the blogs I follow. LOL.  Then today I read a blogpost you can find here that gave me the kick in the butt I needed.  Maybe my blog is helpful.  It is at least to me and that was the reason it got started. So....we come to Nablopomo.  It's a blogging initiative to try and help us get going.  The goal is to post something every day for a month.  September's topic is Return.  So return to blogging I will try!! If even for a one liner.  Wish me luck !

I also want to mention a little baby girl named Maddie that got her angelwings much too soon.

Isn't she beautiful?

I first learned of Maddie through the October Birth Club on BabyCenter.  She was born only slighty more than a week after Nicole.  Maybe that's why I feel so connected to her mom's story.  Maddie lost her life to SIDS in February.  She was only 4 months old.  It was during our low time with Nicole and reading her mom's blog gave me strength.  If she could get through each day so could we.  Today is her mom Kellie's birthday.  All she asked for on her blog at http://kandjstaats.blogspot.com/  was that we dedicate a blogpost to her little angel.  And so I will.  Please remember Kellie today and Maddie.  Happy Birthday Kellie.  You are doing a wonderful job and touching many lives.  Your strength has given me strength on many occasions and I am extending a huge THANK YOU for that.  Hope your day was filled with smiles and ladybugs.