My August Adventures

I’m back! I can’t believe that I was gone for 3 whole weeks! How did you guys survive without me??

My August (even though it’s not quite over yet) has been filled with a lot of adventures.  It’s pretty incredible that I’ve gotten to see so many new things.  At least that’s what the mom’s keep telling me.  I keep trying to tell them that mostly I got to see the inside of our car, but they don’t think that’s as funny as I do.

We drove with a bunch of our friends to Florida to celebrate Rachel’s 30th birthday all together.  For the first few days we stayed in Cocoa Beach, which to my dismay, was not made of cocoa.  But it did have a big sandy beach, a great house with an amazing pool (with a waterfall!) and some really friendly people at the Cocoa Beach Hospital emergency room.

That’s right, I decided that the mom’s were having too much fun with their friends and not paying enough attention to me, so one morning as everyone else was getting ready to go surfing at the beach, I grabbed my g-tube with my toes and kicked so hard that it came out….mission accomplished! After a tiny bit of freaking out by the people who had yet to experience how cool my g-tube stoma looks when it’s just a hole, the mom’s and my Steve, piled into the car and went to the emergency room to make sure that Mama C had put the foley catheter in the right place.  Here’s what I found out about American hospitals – they give you stuff! By the time the 4 of us walked out of there Mama C was carrying a whole bunch of stickers, a syringe that I had decided to play with, a teddy bear and a brand new knitted blanket! Plus, I don’t know how often the people there get to see someone as cute as I am, so I also got a bunch of visitors just coming in to say hello and tell me that I’m adorable. To be honest I got to hear that a lot on trip, especially from my new friends (guys, I have older friends now too – they’re super cool) – Marcel, Andre, Shanelle and my birthday twin Daniele.  They are Rachel’s brothers and sisters and I spent a whole lot of our time in Florida getting to hang out with them – we got to spend a lot of time together in the pool, walking around the parks and snuggling at night. I miss them already.

After our time in Cocoa Beach, we piled back in the cars and drove to Orlando! Our house there was in this gated community, and our house was huge and had 2 pools! One right outside of our house and then one at the community clubhouse.  We didn’t spend a lot of time at that house though, because we were too busy doing cool things like going to Walmart, hanging out at Universal Studios and Islands of Adventure, having dinner at Bubba Gump Shrimp, and you know…going to DISNEY WORLD!

People, it’s magical.  I can’t believe I had never been there before! We were just walking down the street and BAM! there was a parade! Then we kept walking and BAM! there was Mickey Mouse! It’s crazy!

We started the day with a big step for me.  As soon as we stepped onto Main Street USA, we walked into a building and  I was greeted by this lovely woman named Barbara, who escorted me to my very own big girl chair.  From there, Mommy and my entourage (because that’s how I travel now) kept showing me these crazy cool light up toys while Barbara moved around me super quick.  I didn’t really understand what was happening until the very end, when Barbara reappeared with my very own Mickey Ears that read “First Haircut”….the mom’s paid someone to cut off my long, beautiful locks and then tried to trick me by giving me a pair of mouse ears to distract me from the truth! I was having none of it! That evil Barbara (or Maleficent – her real name) put those ears on my head and I began to scream! I hoped someone would notice and make them put my hair right back, but no one did.  Instead they all just laughed.  I realized after a bit more pouting that I’m just as cute with bangs as I was before, so I’ve forgiven them, but I won’t forget.

The rest of the day was pretty magical, once I forgot about my poor hair.  We walked around and saw all of these really cool things.  I got to ride on an elephant that flies (I think Mama C called him Dumbo), on a boat that took us all around the world (it’s pretty small…) and on a beautiful horse that I rode all by myself (if you ignore Mama C holding on to me very tightly as the horse jumped up almost higher than she could reach).  After some ice cream and hot dogs and some downtime to relax, we ended the night with some amazing fireworks and I was asleep before we even got off the monorail.

And just think – that’s only the FIRST part of my month of adventures.  I have more to tell you about – more Florida, Camp JAC, another tooth and our annual trip to the CNE….stay tuned!

Biggest Adventure Yet!

Guys!! I’m leaving! (Not for good, I promise!).  The mom’s and I are running away with a bunch of our favourite people and we’re going to a place called Florida! And more importantly, a place called Disney World!!

You see, our friend Rachel is turning 30 years old and she decided to invite a bunch of cool people down to Florida with her! And so tonight, in about half an hour , we are piling in the car and driving until we reach Georgia.  Then we’ll have a little rest and on Saturday we’ll be in Florida.  I don’t know a lot about trips, this being my first one and all, but Mama C keeps talking about beaches and manatees and sunshine and some guy named Mickey Mouse.  I think that she may even be more excited than I am.

So, with that, I have to go and finish packing my bag.  I’ll see you all when we get back!!

Parties and Brains and Zombies…oh my!

We’re having a quiet day here at home.  It’s raining outside and the mom’s say that makes people sleepy, plus I think I have this other tooth coming through and it’s making me slightly miserable.  I’m thinking about having another nap, but at the same time it’s kind of fun to watch the mom’s get so amused by me refusing to sleep and then fall asleep on the living room floor in a few hours.

It’s been a busy week for our little family.  Last weekend the mom’s threw a really big party  for me.  Originally it was called “Lily’s One Year of Ass Kicking” party, but then someone shortened it to just my “Re-Birthday” party (which frankly sounds nicer because I’m little and technically not aloud to swear yet).  We had an amazing time at MeMa’s house – swimming in the pool, playing Bocce ball in the backyard, eating delicious food and just hanging out with all of the people who were so supportive to the mom’s when I was so sick last year.  People were tricky though and brought presents, which was totally against the rules because it wasn’t technically a birthday party (don’t people follow rules anymore, geesh, kids today) but it was really kind of them.  I even heard a rumour that there were sparklers at the end of the night but someone fell asleep and missed out (okay, I’ll admit it, I fell asleep.  I’m so embarrassed).

After the party this week, I also had to go see my neurologist at Sick Kids to check and see how my brain is doing.  We got there bright and early and got my head all hooked up so they could take pictures of my brain activity while I was resting to see if I’m having any seizures.  And the happy news is, after waiting so long for me to fall asleep and then visiting my nurse Jane and getting weighed (I’m finally bigger than 20 pounds!!), I finally got to see Dr. W and she said that I look amazing! She said that my brain activity looks amazing for a kid who had infantile spasms! She said that we’ll switch to a safer medication for 1 year and then I can start to come off of it.  Fingers crossed everyone that my brain will keep being as healthy for the next year!

Lastly, I just wanted to show off my incredible new talent.  I’m getting really good at impressions – this is my version of Zombie Lily.  I’m tucking it away until next Hallowe’en…

Family, Fireworks and All Around Fun

Summer is really here and I’m finally beginning to understand what all the hype is about this season: it’s hot, the sun stays out way longer, and we’re always off doing fun things.  I don’t really like the part where my eyes keep watering and I come in from outside looking like I’ve been stung by some bees (an expression that I don’t really understand, but other people seem to get), but for the most part, I really like summer.

Over the past few weeks, Mommy and me (and Uncle Steve) have been hanging out at Grandpa’s house doing something called “renovations” – they don’t really have me fooled though, it’s just a grown-up word for big mess.  I have so much fun when I’m at Grandpa’s house – I get to go swimming in the river and we have bonfires at night.  The only part that’s not so great is that we’re away from Mama C because she’s at work and Mommy and I miss her a lot. But that also means that we get to come home to her and that always makes us both really happy.  This week we were up there with my favourite friend-family, the Randall’s (that’s MeMa’s family for those of you who understand my lingo).  They decided to take some time off and they all came up to play with me.  It had nothing to do with the river or the quiet or the canoe or the bonfires, right?

Summer also means that we get to celebrate something called Canada Day.  What I learned is that this is a weekend where we get 3 whole days with Mama C! On the Saturday we all got in the car and drove somewhere called Kitchener to see a whole lot of my family! When my great aunt Crazy Gail died, all of her brothers and sisters decided not to have a funeral but to have a big party instead (she was my kind of woman!).  Even though we were all still really sad that she couldn’t be there to be the centre of this big party, we still got to have a fun time just hanging out and being with each other.

Pa in his party hat…he stole it from Thor!

For me, this meant finally getting to meet some (more) relatives that I hadn’t met yet.  I know I’ve said it before, but I have a LOT of family! I finally got to meet Aunt Helen and Glen, and Aunt Dot from “down east”, and then Uncle Earl and Aunt Sue from “out west”, and then more and more and more cousins: Gary, JP, Sarena, Darryl, Robin, Jamie, Jesse….it was just crazy! Someone also brought pictures from over the past few years and I got to see all of the Aunts and Uncles growing up, and then some of Mama C and Auntie CC growing up too.  I even got to see one from Grandma and Pa’s wedding day!

Snuggling with my cousin JP – he has the same birthday as Momma C!


At this party though, I also go to hang out with Auntie CC, Uncle Rico, Thor and Ollie! It was the first time that Ollie and I really got to hang out and talk – you know, just the two of us.  We had a pretty good talk and he tried to convince me that I could drink water from a cup like he does.  I’m still not entirely sure, but I’m thinking about it.

He’s totally just showing off

Then I got to go swimming with Mama C and Uncle Rico and Thor, which was fun but very cold.  In the end Mama C and Uncle Rico played “kid swap” and I got to snuggle with Uncle Rico while Thor and Mama C went on a swimming adventure.  Then Ollie came in the pool too while I got out to hang out with Mommy, Auntie CC and Alexandra.  They were in the pool for so long that they almost missed dinner! I knew Mama C liked to swim, but where are her priorities?  In the end it worked out okay for me because I got to snuggle with Alex, which is one of my favourite things to do.  Every time she see’s me she gets more and more comfortable and this time she even tried to change my diaper…although she stopped fast when I peed on her!

On Sunday, it was actually Canada Day! Everywhere I looked people were dressed in red and white (except for me – the mom’s made me wear my rainbow dress and said something about Pride – they seemed sad that we weren’t going there).  During the day we went to Stan Wadlow Park and walked around and saw all the vendors and food, Blinky the Police Car and all of the rides that were set up.  We didn’t stay too long because it was very hot and I needed a nap, but we went back at night and that was the best part.  We met Uncle Steve and Telly and Rachel and after they all bought some food, we laid around on a big blanket.  Then, when it got dark, there were fireworks!! I love Canada Day! Uncle Steve couldn’t get over how quietly I just sat and watched the colours and the mom’s seemed pretty happy about the fact that I was obviously watching them as well (sometimes I think they like to be reassured that my eyes are working hard).

 

Sweet Potatos and Joey`s Birthday

So, a little while ago, I told you guys that I had this cold.  It was super annoying because I couldn’t really breathe and I was all sniffly and gross.  On top of that, it’s already hard for me to swallow sometimes (because of my low muscle tone) that when I’m sick it makes it even harder.  This was especially frustrating because my OT at Sick Kids, Lisa, had given us the green light to start letting me eat all kinds of food, but then I couldn’t because I couldn’t swallow them properly.

But luckily this week, the cold has finally gone away and we’re back on the food train!

I really love eating, as long as I think it tastes yummy.  The mom’s gave me banana cream to try and I got very upset by that (it tastes gross).  But when they give me apple sauce or sweet potato, I just go crazy!  Mama C even let me try a bunch of different things at Easter dinner last week and they were so good…I got to have actual turkey and some stuffing.   She told me that we can have them again at Thanksgiving and even though I actually have no idea what that meant, I’m really looking forward to it!  And just in case you’re worried that the mom’s are just spreading food on my face and telling you that I’m eating, I even have a video to prove how much I’m loving it.  (Please excuse my hair though, I’m battling some cradle cap again and so I have a little olive oil going on – not to mention the goofy looking clips holding it out of my face).

This weekend has been pretty exciting, because I was a guest at my very first birthday party (besides my own).  My friend Joey is turning 3 years old (he’s totally cool like that) and so today I put on my party dress, did my hair all pretty and strapped on my favourite shoes!

When we got there I couldn’t believe how many other kids there were! I got to make some really great new friends: Ava and Heidi and Ella and especially Addison (she’s little like me).  I was a little too excited though, because after hanging out for half an hour, I needed a nap.  Luckily, between Michelle, Lorraine and Theresa, I had no trouble staying cuddled enough for a good sleep.  Afterwards, I even got to play with some toys that I’m usually not allowed to play with, like a bouncy exersaucer (don’t tell my OT Kristen, okay??).

But mostly, it was a pretty exciting day because I really do love my buddy Joey a lot.  In fact, I love all of his family a bunch.  My Theresa has known Mommy for a long long long time and I know that they have a special place for our little family.  Joey treats me so very gently, even though he can be tough with bigger kids, and Joey’s daddy Jason is one of the best cuddlers I know.  He calls me his Pretty Princess and I like that he has a special nickname just for me.  And my Theresa, she’s one of the coolest grown-up’s I know.  She loves to laugh with the Mom’s, but then she always complains about having to pee.  But, in spite of that, she also makes the coolest cakes around! You might remember that she made my beautiful birthday snowflake cake (guys – it was sparkly!!) and today, for Joey’s cake, she made a super cool Thomas (and Percy) cake!  I think I’m pretty lucky to know such great people.

Oh excuse me, that’s just my ego

Sometimes it’s hard for me not to get a big head.  I mean, seriously people, I know that I’m cute.  I know that when I glance up at people and give them my squishy face smile, that people melt.  I may only be 16 months old, but I certainly know how to use my cuteness to my advantage.  The mom’s say that I’m learning to be manipulative.  I’ve picked up this little girl cry and I just have to turn it on at the right moment and everyone just stops what they’re doing to pay attention to me.  It’s an impressive power that I have.

But I digress.

The thing is, people are always telling me how I cute I am.  I know that I make a lot of jokes about it on here, but sometimes it’s a little crazy.  Now granted, most of the people who notice already know me in real life, but that’s beyond the point.  Over the weekend one of Mommy’s oldest and best friends, Rita (and her assistant Mike), came to take some photo’s of me.  It was really a lot of fun – I got to sit and just play and hang out while Rita (and her assistant Mike) tried to make me smile for them (I wouldn’t.  I’m a bit of a stinker that way).  Now, with all of their amazing photography skills, the whole world can see, in print, how cute I really am.

First, they took some of me, just being adorable…

No photo shoot would be complete without a cute dog added to the mix (thanks Belle for putting in an appearance!)

And the mom’s had to sneak their way in too…

But my very favourite pictures, are the ones with my Bravery Beads.  These are the beads that I got while I was in the hospital (and just keep accumulating).  Every single bead on the strand represents something that I’ve been through – finger pokes, MRI’s, surgeries, that time I got to ride in an ambulance…I’m pretty proud of those beads….

 

Kind of a Big Deal

For the last few days there has been a flurry of excitement going on at our house.  I didn’t quite understand what was going on: we were shopping a lot, the mom’s were cleaning a lot, and then yesterday Mommy was going to town making all of these donuts.  Then today, I had to get up a little early, have a bath and put on a (really pretty) new dress.  Mama C took extra time to do my pigtails just right and even though I wasn’t feeling great, I let her do it.  Mommy was no where to be seen but then Grandpa appeared and we got to go for a drive in his car (not the lexus though, so I’m still a little disapointed!).  We got to this little community centre and Mama C and I found Mommy, with Grandma and Telly and Theresa all working hard in the kitchen.  Then I turned around and saw Gramma and my great Aunts Martina and Bev and my cousin’s Connie and Alex! I really didn’t understand what was going on.

Before I knew it, the whole room was filled with all of the people that I love the most! Auntie CC, Thor & Uncle Rico, Uncle Jeff and Auntie Marina, Natalie, Joey and Jason, Jacquie (who I hadn’t seen in so long and missed!).  It was just crazy! Everywhere I looked there was someone that I really wanted to go and see and get caught up with.  But the problem was, I was also feeling a little bit sick (my nose has been a bit stuffy and today I started coughing and I think I had a bit of a fever). And when I get sick I do get a little bit cranky, so even though I really wanted to make my way around the room and say hello to everyone, I was also very happy when just one person would hold me and I got to fall asleep.

But after I woke up (and had a bit of a bottle), the mom’s stood with me beside this beautiful blue and white cake and everyone gathered around, camera’s in hand, and started to sing.  For a minute I really didn’t get it (even though I liked the singing very much) but then I realized that they were singing Happy Birthday….to me!!! This was my birthday party! I was so sick and unhappy that I didn’t even notice, until everyone sang and then I got to eat a cupcake! Well, I got to eat the icing off of the cupcake, but everyone knows that’s the best part anyway.

I just couldn’t stop myself from going back for more and more icing.  Apparently it was okay though, because everyone laughed and thought I was pretty cute (they’re learning these people!).   And I really was happy because everyone seemed to have a good time and once I was able to take it all in, I realized just how lucky of a girl I am that all of these people love me so much that they wanted to come and be a part of my very first birthday!  And don’t even get me started on all of the wonderful, kind and thoughtful gifts that people brought.  I might just be the luckiest girl in the world!

Sticky mess and saying Thanks

This week Mama C had to google, “How to get vaseline out of my child’s hair?”  You would be surprised how many hits came up! You see, I have a little case of cradle cap that keeps rearing it’s ugly head.  A few weeks ago, Mommy tried using olive oil, but didn’t wash it out very well and Mama C didn’t notice until she and I were at Sick Kids for an appointment and she took off my hat.  She was not impressed.

So this week, when we noticed that it was getting a little worse, google told Mama C to try using vaseline for 10 minutes and then washing it out.  Well, we washed it out 3 times that night and then Mommy tried to wash it out ANOTHER 3 times in the morning and I still looked like Danny Zuko from Grease.  But this time, the joke was on Mommy because she had to take me to our music class looking all gross.  In the end, google finally helped and we ended up using olive oil again, letting it soak for 10 minutes and then washing it all out with dish soap! It worked, and after washing with regular shampoo as well, my hair is actually softer then ever!

Luckily that was the most traumatic part of my week.  In fact,  other than the vaseline fiasco, this week has been pretty fun.  On Sunday a bunch of my favourite people all got together and we trekked downtown to watch the Santa Claus parade.  Now, I don’t know a whole lot about this Santa Claus character yet.  Last year I was in the hospital over Christmas, so it was just me and the nurses, but from what Mama C has been telling me this Santa Claus guy is kind of a big deal.  She keeps talking about Christmas like it’s this magical time of year and there are lights and happiness and presents! I can totally get behind this.  However, it seems that I was a little too excited about seeing Santa Claus for the first time and I tuckered myself out and slept through the whole parade instead.  Ooops.  Maybe I’ll do better next year.

Then, on Monday I had to go and get something called my RSV vaccine.  RSV is an infection that most people get and it doesn’t cause any problems because it’s like a cold, but in babies who are born early and kids with heart issues like me, it can lead to lung infections which causes far more serious problems.  So, to make sure I don’t get this I have to get a needle once a month until March.  The good news though is that the doctor who is giving me the needle is actually the same doctor who saved my life in July! On Monday I got to see her for the first time since July and she was soo happy to see me! The mom’s brought her flowers and a card to say thanks, even though they found it was a little hard to find the right words to say thank you.  She thought that I looked fantastic and that my pigtails were adorable.  She said, and I quote, “this is the best ending to a code blue ever!”  I was happy to see her and I know it meant a lot to the mom’s to get to see her too.

I’ll leave you with one more picture for today.  The mom’s are starting to feed me some solid food, which is a little tricky because of my big tongue.  It takes me a while to get into the rhythm and the first time they tried, it made a really really big mess.  But I loved it and now I fully understand what they mean by food coma!

Living It Up

I thought that Mama C was joking a little bit when she kept saying that we were going to cram an entire summer of fun into the two weeks before she goes back to that work place, but she wasn’t.  That Mama knows about scheduling (they should give her a scheduling project at work….oh wait….).  We have just been so so busy this week and I really like it.

On Monday, our friends the Randall’s got back from JAC camp and because the mom’s missed them so much (and me too, but that goes without saying) we all went out to dinner and then went back to their house where Madison and Michael held me lots and then Cathy rocked me to sleep.  I was sad when the mom’s woke me up to take me home.  Cathy is pretty comfy.  We also got to see Papa that night (that’s Cathy’s dad) and he is really funny.  He really likes to tease Mommy but secretly I think he really likes her.

On Tuesday, we finally got to go back to Mama C’s swimming lessons with Thor and Darshan.   Mama C has a really good time swimming with them, mostly because she thinks that they’re both “so so cute.”  I also got my g-tube stitches out on Tuesday, which means that I can go swimming now too so I think Mama C will take me with her sometimes so that I can learn to love the water too.  She keeps saying that swimming is in my blood, and I don’t have the heart to remind her that this is not entirely accurate.  The mom’s also keep looking at something called the FUN Guide and they’ve started planning activities for the fall – Mommy is excited for a place called Riverdale Farm and EYCC, so I think we’ll be there quite a bit.

Today, my new home OT, Kristin, came for her first visit.  Mommy seemed to think that I liked playing with Kristin almost as much as Lisa and we got a whole bunch of exercises that I should do to make my neck stronger and hopefully my eyes a little better too.  I heard Mommy and Kristin talking about “a lot of tummy time” so I’m very cautious to see what happens with that in the next few days, but if they try too much I’ll make sure that everyone hears just how loud my screaming can be!  Once Kristin was gone, Cathy, Madison and Michael showed up at our house with Mama C in tow (she had been shopping with Madison) and we all got ready to go to this place called the EX.  Everyone was really excited but I didn’t understand the hype – I mean all of the lights were really cool and everyone laughed about all the gross food they were eating, but I totally didn’t get to ride any of the rides, so i think I got ripped off.  I told Mama C that next year I’m going on at least the carousel!

Tomorrow, we have a super fun day planned with my Theresa, Jason and Joey.  We’re going to meet a place called High Park close to Gramma and Pa’s house.  Mama C said that there is a zoo and geese to feed and a big park to play in (that’s for Joey mostly) and a wading pool and a train ride!! It sounds like my idea of fun.  All the grown-up’s are bringing food so we’re going to have a picnic lunch and just enjoy being outside .  I don’t know what’s on the plan for next week, but if Mama C has anything to do with it, we’ll be busy!

Staying Put

I’m home again.  I’m hoping to stay here for quite some time because as much as I love Sick Kids when I have to be there, after 66 days I was ready to be back at my real home with just me, the mom’s and my dog Ellie.

The doctor’s finally decided to let me go last Saturday, when they saw that I was eating really well after my G-tube surgery.  They were really happy with how much and how fast I’m eatting and they even said that the mom’s could keep trying to feed me more during the day so that they could cut out an overnight feed, which means more sleep for everyone (Mama C is especially glad to hear that!).

You would think that after all that time in the hospital, that the mom’s would want to take it easy when we first got home, but we’ve been moving and grooving since Saturday afternoon.  We were barely home for 2 hours, when the mom’s decided that we were going to meet Mommy’s friends Issac and Jodi for lunch in the park.  We spent some time there and then the mom’s took me for a walk on the Danforth – they picked up some dinner and I had a really great nap. On Sunday we had visitors Grandma and Grandpa Elliott, Uncle Jeff and Auntie Marina, and new relatives from a place called New Brunswick, my Great Aunt Maureen and Great Uncle Jon (who was really nice and told me that a bunch of people in Perth-Andover were praying for me too!).  There was also a blackout that day, which was fine until 8pm when Mama C started freaking out a bit because there was no water to warm my formula AND one of my medications has to be in the refrigerator and gets really unstable if it gets warm.  Luckily, very shortly after Mama C started to get all frantic, the lights came on again and we had a very nice night at home together.

On Monday I got to see my Jason and Theresa and I saw them again today too (but this time with Joey, so it was super fun!).  We also went and spent some time with Gramma and Pa this afternoon, which I liked a lot because Pa got to hold me and he’s never really done that before.  Tomorrow I’m going to the Scarborough Town Centre with Mommy and Telly and I have no idea what the mom’s have planned for the rest of the week, but it looks like it will all be fun!