My August Adventures – Part 1

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!


A Little Bit Naughty

The mom’s would be a little mad if they knew I was writing this post, but there’s just something I think you all need to really understand: the mom’s are a really bad influence on me.

You know, it started off pretty innocently.  When I spent so much time in the hospital last summer and Mama C was working really hard to get me to drink from a bottle, Mommy decided to widen my palate with my first taste of Swedish Berries.  I love to stick my tongue out and taste that pretty red sweetness.  Then when I got home and we went to the CNE, the mom’s let me have a taste of ice cream.

Other times, they let me go outside without a hat! I really like the feel of the wind on my face, so sometimes the mom’s let me sit outside for a little while and just enjoy the wind.  This week especially, while the weather has been so nice, the mom’s have been really great about letting me just enjoy the sunshine.  When Gramma and Pa came to visit this week, we waited outside and the mom’s didn’t make me wear a hat OR a sweater! (I thought Gramma was going to get really mad!).

But the time that the mom’s are the worst influence is actually at night.  Sometimes, when they are hooking up my g tube for my last meal of the night they have to move me around a little bit to get to my tube and I wake up a little bit.  Now I don’t know much, but I do now that I’m a growing girl and I need my sleep.  But apparently the mom’s don’t agree: they think that this is the time for them to pick me up and make me giggle.  It’s partly my own fault because I usually wake up in a good mood and I’m so smiley even late at night.  And lately, I’ve been moving all around in my sleep and just after being in bed for just an hour or two I’ve managed to wrap my blanket all around me and I’ve turned 180 degrees, and they seem to think this is extra funny. I’m telling you, they’re really bad people.

On a slightly different topic, I’m doing a great job with learning how to sit up.  I’m strong enough now to actually sit up in a high chair all by myself!  The mom’s tried when we were out at a resturant one night and I was so happy.  Then, this week when we went to Gramma and Pa’s for Mama C’s birthday, I sat in the high chair at their place for so long.  I’m also getting really great at talking up a storm.  I don’t like to talk so much when people are talking to me, but if you leave me alone then I just start chatting and chatting and then I get louder and louder until I’ve figured out how to yell.  I’m especially good at yelling in the morning…I’ve decided that if I’m awake, I think the mom’s should be too.

Come closer, I have a secret….

I wasn’t always this big you know? I started out pretty tiny – 1.78kg to be exact (that’s 3.9 pounds).  But over the last year, I have grown bigger and stronger with every day and every week and every month.  And now, today is my first birthday and even though there were some sad times and scary times, I think that my life is pretty amazing and I’m happy to be sharing my first birthday with all of you.


Growing and growing and growing

More and more I’ve been showing off my ever-changing personality to the mom’s.  I really like to discover that I can do something new, keep doing it for about a month and then moving on to something new.

For a while, it was this smile:

Then, it was deciding that I really like to suck my thumb, but not the regular way, just with the extra fingers sticking out…

Lately, I’ve decided that I get a much better night sleep if my hair is tied up.  If the mom’s leave it down, then it tickles my nose and I squirm and flip all over the place so that I can try and get it out of the way.  It’s very annoying especially when I’m trying to sleep and it wakes me up.  But then again, I don’t really like anything that wakes me up when I would rather be sleeping, or anything that keeps me from sleeping when I’ve decided that it’s what I want to do.  On Wednesday’s Mama C and I go to a sign language class (we know lots of signs now!) and as soon as the sign language part is done and all of the other mom’s get settled in to have a chat, that’s when I decide I want to sleep and I squirm and whine until I get myself comfortable on Mama C’s shoulder and settle in for a good nap.

The mom’s were a little sad because I decided to sleep through most of Hallowe’en too! We went to Auntie CC, Uncle Rico and Thor’s house, got all dressed in our costumes and just as we were headed out to get some candy I fell asleep in my stroller and didn’t wake up until we were almost done! Luckily, once I did wake up Thor decided he would teach me how to do this thing he called “trick-or-treat”.  I didn’t quite get why he was trying to shove a bag at my face, but the mom’s seemed happy so I let them keep it.

Luckily for Mama C, who I’m learning really likes cameras, we got to dress up for our sign language class that week too.  Apparently Mama C likes to have multiple Hallowe’en costumes, so I got to dress up like a cow too.  It wasn’t a very original idea though…

Luckily, no one seemed to mind the fashion faux pas.

Mostly everyone is just really happy that I’m growing so well.  I had an appointment to get my g-tube looked at and my nurse that day was Claire and she was working the night I was born and brought right to Sick Kids, so she remembers me when I was super super tiny.  She was so happy to tell the mom’s that I now weigh more than 15 pounds and I’ve gotten even taller and am 67cm!  Using something she called the Down Syndrome growth chart, I’m finally catching up with other kids my age – I’m in the 50th percentile for weight and almost the 75th for height.  People better start to look out – I’m going to be too big to mess with soon!

A Regular Kind of Week

My life has suddenly become very busy.  On Wednesday mornings I go to a sign language class and on Thursday mornings I go to a music class.  Both of these are at Surrey Place, which is close to Sick Kids but just a place where kids who are like me, mostly with Down Syndrome but some with some other quirks too, can go and play and learn with other kids who like to learn things at own pace.  Mommy and I have been going for 2 weeks and starting this week Mama C is going to take me to the sign language class so that she can learn too.  I’m happy about that because then I’ll have at least one morning a week to hang out with Mama C.  Have I mentioned that I miss her while she’s at work.  We’ve been trying to get up together in the mornings so that she can feed me a bottle, get me dressed and put my hair in pigtails before Mommy has to get up.  I don’t know why we didn’t start this before but I really like it – it’s just our time.

Last week was Thanksgiving and this is a holiday that I can totally get behind.  On Sunday we went to Gramma and Pa’s house and there were sooooo many people there! Everyone was happy to see how well I was doing and so I put on a good show for them.  I was barely cranky at all and I just kept smiling and smiling my big squishy face smile and won everyone over.  The mom’s were really happy because I’ve had a cold and I can get cranky pretty quickly.  I also got to see Kristy and Tia and Deana who live next door to Gramma and Pa.  It was nice to hang out at their house for a little bit because they have 2 dogs that just love sniffing my toes and they let me pet their fur without getting mad.  Tia also made me a sock monkey, which I love so much and now it’s sitting on my shelf that has all of my favourite toys.

On Monday, we spent the day with Grandma and Grandpa at Uncle Jeff’s house.  I got to spend so much time snuggling with Uncle Jeff and Grandpa.  But I was really tricky with Grandma.  She had been helping Mama C in the kitchen so I didn’t get to spend as much time cuddling with her, but the two times that she finally got to snatch me for a bit, I managed to wiggle around and open the port to my g-tube and leak all over her! The first time was really really messy, but then I thought it would be funny to do it again!

In other news, we saw my regular doctor this week and she is super super happy with how well I’m gaining weight and growing.  She’s so happy in fact that she stopped one of my reflux medications completely AND she told Mommy that they can stop getting up in the middle of the night to feed me! During the day I still have to eat every 3 hours, but we’re just going to do a little more during the day to make up for not doing any eating at night.  The mom’s seemed a little excited about this news but I can’t figure out why.  It’s not like the night feeding was a lot of work – I slept right through it!

Looking Up

After the CNE last week, the mom’s and I had a very lazy weekend.  There were a lot of afternoon naps and snuggling on the couch while the mom’s watched some bad TV (I’m only a baby and even I know that 30 year old women should probably not be watching Degrassi Goes Hollywood, right Uncle Jeff?)  I had some fun time with Grandma and Grandpa Elliott and Uncle Jeff and Auntie Marina on Monday, which was excellent because then Uncle Jeff and Auntie Marina stayed ALL day and we just got to keep hanging out. Today was a big day in my life.  It’s not everyday you know, that a girl turns 9 months! That’s almost one whole year! And to show how awesome I am at 9 months, I decided to start LOVING being on my tummy (especially if I’m lying on Mama C) and remembering how to push my head up again.  Today I did it for so long while lying on Mama C that my muscles actually got all shaky afterwards and I couldn’t hold it up anymore.  Mama C says that I’m especially cute when I lift my head up, smile really big and then snuggle right back down.  She thinks that I did this just to make her feel bad about having to go back to work so soon.

We had a very busy day on my 9 month birthday.  We started by going to see Mama C teaching swimming lessons to my Thor and Darshan.  I can’t swim yet (I don’t even technically know what swimming is) but I know that those 2 boys are really good and they make Mama C laugh a whole lot.  When the swimming was done, the mom’s stood around chatting with Auntie CC and Darshan’s mom Jenna, while I rolled around on my purple Grandma quilt.  Finally everyone decided to leave and the mom’s put me back in my stroller so that we could walk down to Sick Kids.

Don’t worry people – we were only going for a quick visit to say hello to my friends on 4D (the cardiology floor).  When I had my chylothorax, the mom’s had to get special formula and they found out that it was pretty expensive.  But because I went back into the hospital so quickly, I ended up using almost none of the 11 cans that we had so the mom’s decided that they could give back a little bit by giving it to the dietician’s on 4D (since Chylothorax is pretty common with heart surgeries) in case there’s another family who needs it and might have trouble paying for it without being all stressed out.  The mom’s understand that it’s really hard sometimes to leave the hospital without feeling scared and overwhelmed already, and no one should have to worry about money for the right food too.   So, we stopped by the nurses station and I got to see a bunch of my old nurses, who were really happy to see me dressed in real clothes and much much happier then when I was hanging out with them all of the time.  Some of them even said that I looked bigger and we found out this afternoon that they were right! Once we were done at Sick Kids, it was time to go and see my regular old pediatrician.  She was very happy to see me because in just 2 weeks I gained a whole pound and I grew another centimeter – so now I’m 12.5 pounds and 64cm long! I’m totally a little string bean.  The doctor was also happy because I’m still doing really well drinking from a bottle and my reflux seems to have gotten much better (the mom’s say to knock on wood).  It’s actually so much better that I’m able to stop taking so much of one of my medicines and she hopes that next time we’ll be able to start slowing down my other one too.    Obviously this means that getting the g-tube was the absolute right decision for me!

We finally got to come home after all of that and I had a small nap.  My daytime napping isn’t going super well, but since I don’t get really cranky and I sleep really really well at night, the mom’s are just letting this ride out for a bit – plus, they’re still just liking the fact that we’re all at home together so I’m getting a bit spoiled.  They say that has to stop soon but I think I can pull it off for a little bit longer.   I am pretty cute you know.

A Rare Face…

A mom post tonight.  They were able to pull the temporary Ng tube yesterday because our Lily is doing so well with her G-tube feeds.  It’s a gorgeous face that’s been lurking behind that tube.  A tube, that we’re now seeing must have been far more irritating and uncomfortable then we had ever thought because the personality change we have seen in the last 24 hours is remarkable.  Lily has always been a happy, content baby but now she’s smiling all of the time, she let me brush her hair (getting all of the tangles out) and put in the pigtails without a peep and even let the nurse and I do her dressing change (which normally causes a total breakdown) without a single tear.  Between stretching out her vein and getting rid of the Ng tube, it feels like we’re bringing home an entirely new kid.  She’s amazing.