“Today”

A mom post today….

We were driving to the zoo on Sunday morning and Jess turned to me

“Do you know what today is?  It’s today.”

Such simple words but ones with so much meaning between the two of us – it’s almost like a secret language.  “Today” was the day that we almost lost Lily; the day that our lives stopped in an instant and we got caught up in a vortex where the rest of the world ceased to exist.

We’ve talked about it, ad naseaum, I’m sure.  It’s hard not to when a day just sends your life in the total opposite direction of where it was headed.  But the truth is, the direction spinning really started the day of Lily’s surgery.  It was being pulled into a room by her surgeon and being told about her PVS: laying out the two possible outcomes (that the surgery would solve everything and she would show no other symptoms – which he didn’t think was realistic, or the disease would eventually be fatal).  We stood, against the barrier looking out into the Sick Kids atrium, in shock and crying.  It seemed so unfair – she had only been ours for a week and now we were in danger of losing her.  At that time we didn’t know that the disease was progressive and doesn’t work on any sort of timeline, we didn’t know that a heart-lung transplant was an option, we didn’t know that we have one of the most amazing cardiologist teams in the world, we were just heartbroken.  The next few weeks were filled with so many unknowns – words like chylothorax, pleural effusion and pulmonary embolism became part of our regular vocabulary, and we learned about seizure medications, g-tubes and Cortical Visual Impairments.  Those 66 days changed our lives in ways that we probably don’t even know.

And even now, looking back, there’s no way to describe that time and get it right: the fear, the hopelessness and the anger at the situation that are mixed in with the love, pride and amazement at such an incredible little girl.   Sometimes words can’t do it, but sometimes photos can.

We (I) took tonnes of photos during those 66 days, because I wanted Lily, when she was older, to see the physical evidence of how strong and incredible she is.  But these photos have become my own personal therapy – when I get overwhelmed at the possibilities in front of us, I look at these photos and I can see for myself how bad it was and how far she’s come.

But we’re here, 2 years later.  We’ve learned more words and more therapies and our life is nothing like what we had expected when we first brought home that little girl named Natalia.   It’s might be a crazy life – but it’s our life (ten points to the geeks who can identify that quote).

This week, we’re also asking you to send some health, good transplant thoughts to our friend Alexa.  Alexa is a pretty amazing girl, who has something called a UCD (Urea Cycle Disorder) and she is having a liver transplant to help her get super healthy and strong.  We know that life is going to be a bit tough for her for a while, but we want her to know that we’re thinking about her and rooting her on – she’s totally one of Lily’s heroes!

Pre-Surgery Echo & Lily's first overnight visit

Pre-Surgery Echo & Lily’s first overnight visit

Initials in place - waiting for surgery.

Initials in place – waiting for surgery.

They had to keep her fully sedated to keep all of those tubes in place.

They had to keep her fully sedated to keep all of those tubes in place.

In the CICU - the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

In the CICU – the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

Our home away from home...a comfy chair & footstool in the CICU/CCU parent lounge

Our home away from home…a comfy chair & footstool in the CICU/CCU parent lounge

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Taking in the view on our first escape from the room

Taking in the view on our first escape from the room

Post cardiac arrest - the nurses always made sure she was snuggled up tight

Post cardiac arrest – the nurses always made sure she was snuggled up tight

Constantly monitoring her O2 saturations

Constantly monitoring her O2 saturations

First smile post cardiac arrest

First smile post cardiac arrest

Pensive at 2 years

Pensive at 2 years

Monster Lily

Monster Lily

We've come a long way Bugaloo

We’ve come a long way Bugaloo

The Flu, the Army and A Little Extra Physio

Do you know what I’m not such a big fan of? Throwing up.  I mean, technically I do it all of the time, I’m kind of awesome at it, but when I’m not expecting it and it happens all night when I’m supposed to be sleeping I really really hate it.  The mom’s called it a “bug”, which is a really horrible name.  I’ve seen bugs and if that’s what I had then I want to take that up with someone!  The mom’s tried to explain that it wasn’t really an actual bug but a horrible stomach thing that knocked each of us (plus a few other casualties – sorry Randall’s!) on our butts.  First Mama C had it, and we thought she was just faking it to enjoy staying in bed for one whole day, but then Mommy got it a few days later and she passed it along to me! It was seriously bad people…seriously.  Our bodies shouldn’t do things like that, it’s just not right.

IMG_7269

We were a bit worried that this bug would interfere with the big adventure we had planned for the weekend.  You may not know this, but my Pa is a very cool guy.  When he was younger he was in the army and got to go to places called “Korea” and “Japan”, and he hung out with a whole bunch of army people called the third battalion of The Royal Canadian Regiment.  Well last weekend, this other cool guy, Prince Phillip (who is actually married to the Queen!), came to Toronto to give these guys a new flag (it was called presenting them with their new colours, but I guess they’re not as smart as I am because it was clearly a flag).  What made it especially cool was that Pa got to be there and got to sit up close and watch it all happen.  So, the mom’s and I met up with Auntie CC, Uncle Rico, Thor, Ollie & Gramma, and we went to watch the Prince and Pa hang out with the army.  It was so so busy and I was still a bit cranky because of the “bug”, so I didn’t get to see a whole lot of the ceremony, but afterwards we got to watch a military parade and we got to see so many army guys! There was lots of bagpipes (Pa really liked those), and drums (Pa liked those too, he used to play a big bass one), horses and swords and even a canon! I really liked that part – there were so many colours and music.

IMG_2451

IMG_2551

IMG_7479

I took it nice and easy this week, to make sure that I was feeling all better, but then today the mom’s surprised me with a trip down to Sick Kids.  Luckily I wasn’t there for a bad reason! The mom’s had been asked if I could be a volunteer for a course for a group of physiotherapists.  They were learning something called NDT (neurodevelopmental treatment).  This kind of treatment helps kids specifically like me – with both some physical and neurological challenges.  I got to work with the instructor, an amazing woman named Jane Styler-Acevedo from Acadia University, who was super patient and kind and knew instinctively that I needed some extra time to figure things out.  We worked on trying to get me moving from sitting and standing, because I’m finding it very hard to figure out how to do that, especially because I don’t like using my hands.  By the end of the session, the mom’s had some good ideas of how to keep working with me, plus everyone in the class clapped for me and spent a long time telling the mom’s how cute and adorable I am.  It’s hard work trying to make my body do the things I want it to so that I can be independent but I’m getting very frustrated at not being able to do it.  I keep reaching for things and get very annoyed when I can’t get to them and I hate being strapped into my high chair to eat now because all I want is to be down on the floor playing! Hopefully the things we learned today will help.  Keep your fingers crossed for me okay?

IMG_2694

IMG_2674

IMG_2670

Other than all of those things, I’ve just been very very happy these days.  I’m chatting up a storm and trying to figure out different sounds.  I figured out how to knock on doors and now I like to think that everything is a door and I want to knock on everything.  I’ve been loving the spring sunshine and especially that we’ve been going on lots of walks with the mom’s and Gus.  I love spending time outside and trying to grab the bushes and leaves – they feel so funny in my fingers, but mostly I love to grab Gus.  He’s so nice and just lets me keep grabbing his fur and his mouth and his ears and sometimes even his teeth.  The mom’s say I’m lucky he’s so patient with me, but I think it’s just a bribe – if he lets me pull on him, he knows that I’ll keep throwing food on the floor for him to eat – we have a good thing going.

IMG_7449

IMG_7586

IMG_1469

 

 

A Great December

Guys, it’s a good thing that it’s almost the new year, because I totally need to make a resolution that I’m going to update you all a lot more often.  Lately I’ve just been so busy that by the time I can sit down and write a post so many things have happened and I’m scared I’m going to forget something.

jessandlily

First – it was my birthday and now I’m 2! That meant it was totally time to party.  The mom’s planned a fun afternoon for me and my friends – there was a slide and a ball pit, cars to drive, lots of food and then cake! Can I tell you that I’m seriously digging cake.  My Theresa made the most delicious cake ever (because that’s what she does) and it was so good that I actually tried to eat the plate!

lilycake

I got to see so many cool people – my birthday twin and my BFF (Daniele & Shanelle) came, even though they’re so much older and they brought their friends Sarah and Cameron, who were so much fun, and they even let Rachel and Tammy come along too.  I got to spend a lot of time with my friend Caleigh too, who is the same age as me but knows how to run and walk.  Even still, she slows down so that we can play together – she’s awesome! Mostly, it was just the best birthday ever! I can’t wait until next year.

caleighandlily

It was more than just my birthday party that was super cool, it was also my birthday present from the mom’s…they bought me a puppy! It’s a boy puppy and he’s black and fluffy and the mom’s say he’s going to be really big (which is better for me because then he’s kind of like a pony!).  There was some debate about his name because Mama C was telling Mommy not to be ridiculous, but I think that in the end Mommy won because we’re all calling him Sprinkles now.  Mama C looks a little embarrassed when she has to call him when we’re out for walks but Mommy just laughs and laughs so I think it’s okay.  Sprinkles and I haven’t spent too much time together yet, because he’s a little bouncy and bite-y still (the mom’s say that’s because he’s teething like I am), but sometimes he just sits nicely and lets me pet him (and by pet him I actually mean pull on his fur or try and stick my fingers up his nose).  The cat doesn’t really like him, but she’s outnumbered so too bad for her!

sprinkles

I had my latest check-up with my cardiologist at Sick Kids last week.  I had to be sedated so that they could do an ECHO and look and see how my heart is doing.  The mom’s were super happy because even while I was on the medication that makes me sleepy, my oxygen sats stayed as high as 96%, which is pretty incredible.  And it turns out that it’s because I am incredible! Dr. Dipchand says that my hearts looks amazing! She confirmed that there is no blood flow at all coming from my left lung, but I’m handling it really well and there are no signs that my pulmonary pressures are high.  All of this means that I don’t have to go back and see Dr. Dipchand for ONE WHOLE YEAR! She and the mom’s talked some more about some down the road, long term stuff, but for now, unless I start showing signs that something is going funny, then she said there is no point in coming in to take another picture to show us the same thing.   It may have been the best birthday/christmas gift ever!!

crystalandlily

Speaking of Christmas – I just wanted to tell you all that I hope you have a very very very merry time with all of your family or friends or friends who are family.  I know that I’m very very lucky to have incredible people in my life who make the holiday’s so happy and amazing and I just hope that you do too! Plus, I met this Santa guy and he seems to know what’s going on….so maybe talk to him too and he’ll sort you out…

lilyandsanta

The Lily Pond

I’m guilty.  It’s totally my fault.  The mom’s have been bugging me to write a new post for ages and ages, but they wouldn’t accept my excuse of not knowing how to type!

So, here I am, back again to fill you in on all of the going-on’s in my very busy life.  I promise that from now on, these posts will happen in a far more timely manner – it’s too hard trying to remember everything that’s happened if I let it go too long.

We had little out of town adventure with all of the mom’s favourite ladies for one weekend. We drove so so so far and went to a place called Bancroft – we barely even had cell phone reception, which was a big big step for the mom’s.  Most of the weekend was rainy, but there was a big big big fireplace and lots of boardgames and lazing around.  And the best part was that there were so many doggies there too! Rachel brought my Charlie, who I hadn’t seen since Florida, but then our friend Toby also brought her dogs! And two of them are even famous! Ginger and Buddha were in the movie Snow Buddies! They played Buddha (obviously) and Rosebud! Buddha was fun and has a tail that likes to wag all over the place, but Ginger was my very favourite.  She likes to snuggle up close and was so gentle and sweet and let me pet her for hours on end.  She could be my new best friend.

This fall has been very adventure filled for our little family.  I eventually learned what “escrow” meant. At first I was very excited because a new house sounded very cool but then I learned that what it really means is a LOT of work, especially when you’re trying to move in just 3 weeks! Mommy worked very very hard for those 3 weeks trying to get everything organized for us so that we didn’t go totally crazy.  In the last week, I got to spend some time with Mrs. Auty (that’s my Steve’s mom – she keeps telling me to call her Fran, but for some reason I just can’t do it.  It must be genetic), and then Gramma came and spent 3 whole days with me so that Mommy could actually be at the new house and not worry about me getting into trouble. It also meant that the mom’s dragged me all over the place – Home Depot for paint, Ikea for a whole bunch of new furniture!  On our actual moving day we had a whole lot of help – not that I got to see most of them because I got to spend the day with MeMa.

Then, ass soon as we got moved in, ALL three of us got sick! Mommy had it first and then she gave it to Mama C, who then got even sicker and had to take medicine – she even had to wear a mask when she and I were hanging out.  And we were hanging out a lot – especially at night.  You see, I was sick too (mean mom’s!) and it was really hard for me to breathe in my bed, so I decided that it was just better to stay up as much as possible.  I mean, I wanted to sleep but when I did, when I woke up I just felt so gross that I would just cry and scream and I didn’t want anything except to be held.  I heard Mommy tell the doctors that she thinks I only really slept about 4 hours in a 48 period.  I don’t know if that’s really true, but I decided to throw the mom’s a bone last night and I slept through the night.  Now, if only Mama C would stop coughing and waking me up!

With all the busy-ness and the sickness, I’m especially sad that I haven’t had a chance to go and check out my new pool.  Yup, you heard me, my new pool.  Mama C works with swimming pools, which is a pretty cool gig, but even there people seem to love me more than they love her.  These guys decided that Regent Park needed a brand new pool because it’s getting to be such a cool neighbourhood and part of the amazing new Regent Park Aquatic Centre is a tot pool with all of these really cool features – bubbles and spray features, and it’s always warm and shallow enough for little kids to play.  And one of Mama’s C’s bosses decided that this new tot pool would be named after me! I’m not even kidding…I even have a sign! I’m super sad that I haven’t had a chance to go swimming there yet, but it’s my pool – I totally have time!

Sadly, being sick also meant that we had to cancel a bunch of physiotherapy appointments too.  Which is a little sad because this fall I’ve started doing some really crazy amazing things! I decided that I was getting tired of just sitting around, so I’ve been working on scooting all around the house on my bum (which works a lot better on the floor at the new house), reaching for anything and everything that I can get my eyes and hands on, especially people’s faces, and the hardest thing has been learning how to stand up! I still can’t quite do it all by myself, but my legs are so so so much stronger than they ever have been and I’ve even started taking some steps with some help from either the mom’s or Kristin or Anne Marie.  I still have some work but trust me people – I think I’ve decided that 2013 is going to be the year I start to walk!

Cookie Monster….I mean, Master….

A mom post tonight….

Although we try not to dwell on it too much, there are certainly some aspects of Lily’s diagnosis(s) that can be challenging as her parents.  It can be really hard to see her work so hard and not make the gains that you want her to be making.  It can get frustrating when you finally reach a long awaited milestone (sitting for example) and realize that there’s no real time to celebrate, you just have to jump back in to keep working on the next skill (transitioning between lying down and sitting – she can get down, but getting up is proving to be a pretty tough skill).

But then, then there are days like today, where all of the work pays off and you end up amazed at such a simple thing – like eating a cookie….

Momma had been doing all the cookie work until now

lips can be a very big distraction – who knew?

Success!!!

And just to make it even better, she moved that cookie right to the other hand

post cookie glory

We only got about 3 full bites and then she spit them all out – that little down syndrome tongue is a great hiding place…

But speaking of new skills, Lily has mastered two other things this week: the skill of the fake cry, complete with squeezing her eyes to make the fake tears come, and the art of staying up past her bedtime by becoming the smiliest, most giggle filled girl you’ve ever met.  She’s a sneak this one…

tired eyes mean nothing

 

 

 

A Stand Up Day

I know that some of you may be under the impression that because I’m a little girl, that my life is pretty easy.  But let me tell you, you can not come as far as I have in the last year without working a lot! Sometimes the work is kind of fun, like when Janet, my vision worker comes.  She always brings new toy ideas for the mom’s or shows them some new iPad apps that we can use to help me work on my sight.  And when my OT Kristin comes, I get to eat anything I want AND play with toys.  It’s pretty amazing.

But then there’s PT (that’s physiotherapy for those of you who aren’t up with the lingo).  PT and I aren’t always really great friends.  You see, I have this little issue with sensory input, as in, I don’t like it.  Well, that’s not entirely true, I like it when I’m entirely comfortable with it and I can control it.  The problem is, to be comfortable with certain things, I have to learn how to do them and that’s where my physiotherapist, Anne Marie, comes in handy.  She’s really great at understanding that sometimes I need to go slow and need a lot of coaxing before I’m ready to try something new (this is called sensory prep).  So, before I learned to sit, she would take my hands and wrists and put a lot of pressure on them so that I got used to the feeling of having my arms bear weight.  I used to scream when she would do it because I didn’t like the feeling.  It didn’t hurt, but it was just different and sometimes I’m not so great with different.  But eventually I got used to it and now I love to sit.

But now, apparently just sitting isn’t enough for everyone. They want me to start working on creeping and crawling and even standing up!  They just don’t get it.  I mean, if my hands didn’t like sensory input then my feet really didn’t like it.  For a while Anne Marie (or the mom’s practicing at home) would have to lock my legs into place and then just hold me tight against them while I practiced being on my feet and letting my legs feel the pressure.  Luckily for me, Anne Marie is very very patient and calm with me and when I start to feel afraid, she just pulls me in close for a quick snuggle so that I know that I’m safe and we start again.  She seems to know, without me really telling her, that I just need a little extra time to do things my way.  And because of that, look what I was able to accomplish today!

That’s right people….no hands!! That’s just me and the balance ball, hanging out and standing up! I’m kind of a big deal….