Million Dollar Day

There are absolutely no words to describe the day we had…but of course I’m going to try.

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Today was Lily’s playground build – an incredible gift granted to her by the Million Dollar Smiles foundation and sponsored by the Bank of Montreal.  The volunteers were all in place by 9am this morning, and after a few words (and tears) from Jess and I, they were off.  Lily was banished inside the house for the day so that she would be surprised at the final reveal, but Jess and I were able to come in and out (although not allowed to help – we were told just to spend the day relaxing with Lily), take photos and chat with everyone, and so we were able to see the incredible work in progress.  By 2:30pm, they were done, and luckily just as my dad arrived, we were allowed to bring Lily out and show her this incredible backyard haven.  She was a little overwhelmed at first by all of the people, but by the time she played in the swing, took some photos and almost dove face first into the cake, she was happy to be passed between everyone who was eager to just say hello.  I’m not exaggerating when I say that she pretty much disappeared for at least half an hour, and loved all of the hugs and snuggles she got.  By the time they wrapped up and started to head home, we couldn’t believe that this day had finally come to a close.  After a visit from Jason, Theresa and Joey, and dinner with Pa and Gramma (who of course had to try the slide out for herself!), by the time 7pm rolled around, Lily pretty much dove to get into her bed.

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I’m just focusing on the details, because I don’t even think that I can wrap my head around what emotions I’m feeling.  Beyond the excitement and eagerness to get out there and start playing, I’m just so overwhelmed by how it feels to be on the receiving end of such an incredible gesture.  I tried to explain it to the volunteers in the morning while recounting Lily’s story for them: to be able to just take Lily out to our backyard and play, on a structure that will grow with her and her abilities, is such a gift.  For us to have something, right here, that can take all of the skills she is practicing in therapy and to actually be able to use them in play, is something that we probably couldn’t have given her.  That isn’t to say that some sort of play structure was never in the future, but the fact that it’s this one – that truly has features that work for her, coming at this time, is incredible.  The playground also included a small picnic bench and I just had this amazing vision of Lily sitting there, playing while her g-tube backpack sat beside her, enjoying the sunshine and just being outside, instead of being stuck in her highchair while she eats for an hour.  Beyond that, the fact that our backyard was just filled with total and complete strangers, who all looked so happy and excited to be there and who came up to us all throughout the day and thanked US for giving them the opportunity for doing this was mind-blowing.  When we told them Lily’s story in the morning, there were a few people that I saw wiping away a couple of tears, but at the end when we were able to bring Lily out and they got to meet her and see her playing, I was the only one crying; everyone else had these incredible smiles on their faces and I realized then that the name of the foundation, Million Dollar Smiles, is about so much more than the smiles that appear on the kids faces but also about the great feeling you get when you see your efforts being truly appreciated.  How the end of just a single day could feel like a “full-circle” moment is beyond me, but it really did.  We just kept thinking today about how the neurologists told us that we shouldn’t hold on to any hope that Lily would see again, that she was blind and that wasn’t going to change – it felt like looking at an empty backyard, empty and bleak and a world that seems cold and unwelcoming.  And now, just like when look behind us and see how far Lily has come and how she has constantly surpassed so many of the expectations that people had for her, our backyard is just filled with hope of what the days ahead will bring: hopefully many afternoons filled with laughter, love and growth.

One more minute and this cake may have ended up on the ground - this bug is totally into throwing everything!

One more minute and this cake may have ended up on the ground – this bug is totally into throwing everything!

2 great women: Janet, Lily's vision therapist, who nominated our family, and Ana, the founder of Million Dollar Smiles

2 great women: Janet, Lily’s vision therapist, who nominated our family, and Ana, the founder of Million Dollar Smiles

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So thank you to Million Dollar Smiles and BMO. Thank you for giving our backyard, and our family, an amazing future to look forward to.

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No one pushes a swing better than PaIMG_0004

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Clearly this is going to be just as much fun for the mom’s!IMG_9808

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Cardiac Kids

By being a, “heart mom”, we get to see a lot of amazing things that happen on the 4th floor of Sick Kids.  The staff – doctors, nurses, OT’s, dieticians, child life specialists – they all play such a huge role in making incredibly scary situations actually seem managable.  Luckily, behind them, is a group called Cardiac Kids, a volunteer group that focuses on raising funds for the Sick Kids cardiology wing.  They focus on providing funds for  the cardiology nursing programs which support the incredible nurses on the 4th floor – easily the best in Canada!

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Beyond nursing, Cardiac Kids also works to support cardiac kids and their families and they really aim to do this through CHD awareness.  One of the projects they’ve been working on is a Cardiac Kids blog: a group of heart mom’s who will rotate blogging about life with heart issues.  The blog posts won’t necessarily focus on just hearts, but about life overall and what it’s like to balance both the amazing and hard parts of a life with CHD.

I was honoured to be included in this group of mom’s.  45% of kids with Down syndrome are born with some sort of congenital heart defect, so it’s something that affects the DS community at large but I find that it’s also something that people assume is just part of the Down syndrome package.  When Jess and I first heard about Lily’s heart condition we fell victim to that mentality; we assumed that it would all work out okay because some kids with Down syndrome have heart issues and it’s just a quick surgery and it’s repaired.  Lily’s PVS diagnosis immediatly changed that, but I also don’t think that we could have lived through her surgery and recovery and not had that experience change our perspective.  Beyond everything else that happened, those initial days of sitting beside Lily while she was in the CCCU, worrying about when her sternum would be closed, wondering when she would come off of the ventalator, dealing with fevers that spike and O2 sats that drop unexpectedly, it changed us completely and we understood, completely, that without the incredible medical intervention, Lily would not be with us.

So, if you want to take a peek at our first post, an introduction to Lily’s story, you can see it here! If hearing her story helps or brings awareness to even a couple of people, then it’s a story that we’re happy to share.

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A Post Full of Heart…

February is Heart Month – the month that celebrates love also takes a little time to bring awareness about CHD (Congential Heart Disease) to the forefront of people’s minds.  Yesterday my Facebook page, twitter feed and blogrolls were all filled with people sharing their experiences – hopeful experiences.  I struggled all day trying to figure out how to join in, but my heart wasn’t really into it.

Being a heart mom is like walking a fine balance between “regular” reality and “heart mom” reality.  It’s a thin line sometimes – when everything is going well it’s sometimes easy to sit back and enjoy: to watch your child do things that their heart doesn’t always love them to do.  But one of the big downfalls of being a heart mom is that the line can get big very quickly and you’re thrust back into “heart mom” reality and your eyes are watching every moment – every hour, every breath, every change in personality and trying to find the right balance between overcautious and just a mom who knows her child.

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This week we’ve been struggling a bit with that line.  Lily has been amazing – has avoided both colds that kicked my butt; she had a touch of the flu that flew through the rest of our family but it only lasted a day or two and she bounced back incredibly fast.  She’s had lots of energy and has been bouncing and happy.  But last weekend, what felt like overnight, her personality changed: she was quiet and extra snuggly, cycling between content and incredibly irritable and clearly exhausted by the time she and Jess would pick me up from work.  Her normal bedtime is around 7pm, but she was so tired at 5:30pm that she would fall asleep in the car and then was so overtired by the time 7pm came around that it would take her hours to get settled again.

The problem is, if you take the heart factor out of this, this list of “symptoms” could be anything – how many kids who are teething, in a sleep regression, or just fighting off a cold have acted the exact same way?  And really, how many of us, as adults, have one or two crappy nights of sleep and then are out of it for a week until our bodies readjust?  But, Lily is Lily and you have to include the heart factor and that’s when the fear settles in.  Both Jess and I try really hard not to panic at the sight of something that is a mild heart symptom, because it still could be something else.  There are more obvious signs – cyanosis, increased breathing rate, sweating – that would cause us to jump into action, but when it comes to the smaller signs, as hard as it is sometimes, we like to just wait and watch.  One of the nurse practitioners at Sick Kids gave us that advice after Lily’s cardiac arrest: just watch her because you know her best.  So, we’ve spent the week watching and while we’re still cautious, I’m starting to feel more hopeful that this was just “something else”.  She had a great night sleep last night (even if we did end up just giving in and putting her to bed at 5:30pm), has been smily and active all day, has been singing alongside of me while I’ve cleaned the house and went berserk when we brought out a couple of new toys that we think she’s finally ready for.  But the truth is, it’s a worry that keeps me up at night: do we watch or do we act? If we watch, will we know when the right time is to act? If we act, are we just being overprotective? And sadly, as a heart mom, this is one worry that doesn’t get to go away.

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The heart seems to be the muscle that’s getting all of the focus in our lives this week.  Years ago my father was diagnosed with an abdominal aortic aneurysm and he has an amazing doctor at Toronto General who has been monitoring it’s growth and balancing the decision between watching and acting, deciding that once it grew to 5cm then they would surgically intervene.  For the first years it grew very slowly, but then last year the growth sped up and just before Christmas we found that it had it had jumped over the 5cm mark and they decided that it was time to act.  There was not a lot of discussion around which of the two possible repair options would be done – my dad is 84 years old, has smoked all of his life and doesn’t have great heart health to begin with, so it only made sense to do the less invasive surgery; a stent-graft is inserted into the aorta via a catheter that goes up the artery from the groin.  Scans were done and measurements taken and sent off to Australia, where the stent-graft is made and the waiting game began.  In the meantime my dad has been in more pain and was worried about the possibility of the aneurysm rupturing so booked another visit with his doctor and that’s when we got some less than exciting news.  The femoral artery that the surgeons need to access to place the stent is too narrow and they’re not able to move ahead with the less invasive surgical option.  The other surgery is the more traditional, open option and is now the surgeons only choice.  However, after looking at his last MRI, they have now found that my dad is 2 blockages around his heart – one of which is in his artery.  This increases the risk of performing this surgery to the point where my dad’s doctor is not sure that it’s an acceptable risk.  Over the next two weeks the surgical team will meet and make the final decision – do the surgery, or don’t do the surgery.  Obviously, without the surgery, the aneurysm will eventually rupture and the mortality rate for that is 50% before a patient even arrives at the ER.  It’s one of those things that doesn’t actually feel real, as though I’m just regurgitating information without letting the words meanings set in.  I feel like, with the information that I’ve heard, I still don’t actually know what’s this all means.  So, while I’m struggling with that, if you can please send all of your “smart brain” vibes to the surgical team and help them make the absolute best decision that they can – one that hopefully keeps my dad with us for a really long time.

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Fierce

If, fifteen years ago, you had told me that I would be able to sit in a room, reading medical records and understand the following sentence, “loss of grey-white differentiation consistent with Hypoxic Ischemic Encephalopthy; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring the the posterior frontal lobe along the vertex”, I would have laughed you out of that room.  I skipped any part of grade 10 science that involved dissecting anything and followed that by never taking another science class again because words like, “ischemic”, and “encephalopthy”,  actually caused me stress.

But, here I am, fifteen years later, and that’s exactly how I spent my morning.

After Lily’s yearly visit with the thrombosis team at Sick Kids in November, we realized that there were some gaps in our knowledge of Lily’s medical history – nothing really significant, but things that you couldn’t know unless you had been beside her listening to daily rounds.  And, as those of you who really know me may be able to appreciate, I don’t like the feeling of not completely understanding what’s happening to someone I love.  That’s my role in our family – when someone gets sick, I start to research and I don’t stop until I have a very firm grasp on the entire scenario.  So, shortly afterwards, I made an appointment with the Health Records department at Sick Kids to come in and view Lily’s medical records and that’s where I spent my time this morning.  They were kind enough to set me up at a little round table and slapped 4 massive folders in front of me.  After a quick lesson on how the charts are arranged, they left me in peace to read to my hearts content.  I’m very happy to report that there were no major surprises: a small allergy that we didn’t know about, a little more family information from the social work department, and the knowledge that Lily’s PVS was diagnosed before she came into our care (we had always thought that it was simply suspected and the surgery she had shortly after she was placed with us confirmed it) and she had actually already lost function of her lower left pulmonary vein before she was 4 months old.

What was amazing to me, although it shouldn’t be surprising, is how surreal it felt to be staring at one or two sentences that actually fill our entire lives.  It’s amazing how words can do that, how sometimes they actually just say the bare minimum and not say anything at all.  If you were just someone reading the sentence, “loss of grey-white differentiation consistent with HIE; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring in the posterior frontal lobe along the vertex,” you would just read the words.  Maybe you would understand that it means a brain injury that occurs when the brain is deprived of an adequate of oxygen and that the injury is shown mainly on both sides of 3 different lobes and at the back of a fourth.  But, you don’t really KNOW what it means; you don’t know that it means that Lily will be blind, totally and completely blind for 3 months and then suddenly one day start seeing again.  You don’t know that it means that Lily will not move the left side of her body for what feels like forever, and will struggle to sit up and to hold a toy until one day she sits up and then she bum scoots across the floor and then starts pulling things off of the coffee table and bounces in excitement when you hold up Hug Me Elmo because she’s so excited to play with him.  You don’t know that it means that Lily is delayed in her speech and sometimes you’re so afraid that you’re never going to get to experience that moment where she turns, looks up at you and calls you Mamma until one day she starts pulling on the cats tail and looks another child in the face and you’re a little less afraid.  Two sentences that seem like nothing more than words on a page, but that make up every single day of our lives.

But then you get to think about it a different way.  There were a lot of other words in those charts – a lot of words that basically said that a lot of people were uncertain about Lily’s future and suddenly you’re thinking about Lily and realizing that she is proving these 4 charts of words wrong.  Those words mean nothing when it comes to determining who Lily is and who she will become.  She has surpassed the expectations of so many people and this is just the beginning.  I left the medical records department and met my lovely wife and my incredible daughter and we all went upstairs and had our visit with Lily’s neurologist.  And instead of thinking about those two sentences, I kept thinking about the other words that have become a Lily mantra of sorts, the ones that, to me, sum up Lily far more accurately than anything written in those 4 charts…

“and though she be but little, she is fierce.”

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Happy Heart, Happy Birthday

Cardiology came and went.  They sedated, they scanned, they saw, they pronounced her heart strong and her lung pressures stable.  They said to come back in a year.  It was music to our ears.

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There was a moment, one breath-holding, heart stopping moment.  While Lily was conked out from the sedation (which was rare in itself, normally she does not sedate well and wakes up part way through) and the ECHO was happening, the technician stopped and walked away to make a phone call.  The last, and only, time that`s happened, was the day they found the blood clot on her triscuspid valve and everyone went into panic mode.  Shortly after, the nurse came over and retook Lily`s blood pressure.   Suddenly it was as though everything was swirling in front of my eyes, but no one was saying anything.  The nurse was speaking to me no differently than she had been 10 minutes before when we were laughing at Lily`s snores.  The technician didn`t come back, but they did her EEG and then sent us on our merry way.  But that whole time, I was  on guard: what had they seen, what was Dr. Dipchand going to tell us when we finally made it into her office.

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And it turns out that she didn`t tell us anything, because there was nothing to tell.  My own PTSD-inflicted panic was exactly that – just my own brain playing tricks on me.  In fact, Dr. Dipchand started the appointment with, “So, I hear she`s fabulous.` Let me tell you, those are GREAT words to hear at the beginning of the scariest appointment of the year.  But she`s fabulous – the heart repair still looks amazing, and her lung pressures, which are our biggest concern, are wonderfully low.  Dr. Dipchand banished us from her office for a year, unless we start seeing symptoms that give us a reason to be concerned.

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And so now, we party! The nice thing about cardiology is that her December appointment always lines up nicely with Lily`s birthday party and gives us an extra reason to celebrate: not only is she 3 but she`s a healthy 3 year old!  That is certainly a cause for celebration in our eyes.  This year, we`ve been feeling especially thankful about Lily`s development in general: she`s eatting more, she`s finally starting to babble and talk, she`s actually finding things funny and laughing at them, and she`s stronger and making huge physical strides – 2013 was just a year of leaps and bounds for her and we`re so grateful for that gift.  So, to pay back some of the karmic goodness that has come our way, we thought we would use Lily`s birthday party to give back to Sick Kids.  We`ve asked each of her guests to bring an unwrapped toy for the Sick Kids toy drive.  It`s just a little gesture, but the memory of living at Sick Kids, of being isolated from your family and friends and living in your own little hospital room bubble will always feel fresh in our minds and the thought of any family having to do that over Christmas is hard to think about.  Somedays it`s hard enough to get downstairs to get something to eat, let alone getting enough time to go shopping for gifts.  And for families with more than one child – to have to balance it all….it`s overwhelming to even consider.  So, hopefully the toys that we`ll collect and drop off will make someone`s life just a little bit easier, so that they can actually focus on enjoying the time they have.  Because sadly, as we`ve seen this week with the passing of Little Joe Sargeant, sometimes you don`t get a lot of time and all of it needs to be in that room.

If you had followed Joe`s story at all, then this plea will be familiar, but if not, then please take a minute….

Joe was born with a heart condition called Hypoplastic Left Heart Syndrome (HLHS), which is essentially half a heart.  For months he fought while waiting on the transplant list, hoping that a new heart would come in for him.  Sadly, at 6 months old, he decided that it was time to rest and he passed away early yesterday morning.  Throughout his fight, his family have been pushing the awareness for organ donation, in hopes that, even if a heart couldn`t be found for Joe, that other families would see thier loved ones saved.

Obviously, this story hit us very close to home, as there may come a time in Lily`s life where she will be the person on that list, so we`re asking you to take a little time and consider registering to become an organ donor.  Becoming a donor is so easy – all you need is your health card and 5 minutes.  This one decision, could help to save the lives of up to 8 people.  I think that`s a much better way to spend 5 minutes then, I don`t know…reading a blog entry 🙂  Think of it as a birthday gift to Lily!  And you can do it right now (seriously, right now) by just clicking on this link…..

Be A Donor – Do it for Lily!

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“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 Many Adventures of February 26th and Beyond

This last month has been totally and completely unreal and I barely know where to begin.  I think it’s easiest to start telling you all about the crazy day of February 26th and then I’ll fill in the rest.

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I think I told you all in a different post that the people at Momma C’s work were nice enough to name the tot pool at the new Regent Park Aquatic Centre after me. That alone was cool enough and I would have been perfectly happy just seeing my little sign each time we went swimming there, but then one day in February, Momma’s boy boss asked her to bring me swimming at Regent very early in the morning because something called “Breakfast Television” was there.  So, we woke up super crazy early (I’m talking by 5am people) and we went swimming.  I actually had a really good time, even though it took me a little while to get into it but after an hour and a half, I was just so cold that I had to get out.  Once I was dressed again, Momma C took me into the back office to see all of her work people and then this pretty woman named Jennifer Valentyne came in and started telling me to get ready because I was going to be on TV! So, Momma C and I walked back out to the pool deck, sat down beside the big camera and then this happened:

Since then, people keep telling me about how cute I looked on tv and what a great job I did, and how they especially love that I looked towards the camera and made my squishy face for the whole world to see.

Our day continued and I thought it was going to be a good one! Gramma (aka. Granny Pig – that’s Thor’s new name for her and Momma C really loves it) and Pa came over for dinner and we were all playing happily while Mommy was cooking.  It turns out that maybe Mommy should have had a little nap that afternoon because suddenly she was yelling for Momma C to get a fire extinguisher because the oven had these big yellow and orange flames coming from it.

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Now I was strapped safely in my highchair eating MY dinner, so I didn’t actually see it happen, but there was a lot of confusion because the fire extinguisher upstairs didn’t work and Momma C had to run downstairs and get that one.  Luckily she was superfast and Mommy put the fire right out.  It made our house all smoky and gross but at least we were all safe.  Gramma says that the mom’s just didn’t want to cook dinner and this is how they justified getting Wendy’s instead!  In the end the stove ended up being taken outside to the garbage people and we got a new one instead.  It was a very very crazy day!

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A few other things have been happening that are a little bit exciting.  Momma C was asked to write an article for the Canadian Down Syndrome Society’s quarterly magazine called 21 – it will be published in May for all members of the CDSS and at their 2013 Conference in Winnipeg.  Then, through writing the article, we were also invited to celebrate World Down Syndrome Day (March 21st – get it, 3×21 because there are 3 copies of the 21st chromosone) with the CDSS by ringing the bell to open the market at the Toronto Stock Exchange! We’ll be there with some other amazingly cool (but not as cute) people, including Dave “The Wave” Cass, who works with the Toronto Argo’s! Plus, I get to dress up and that makes the whole thing even better!

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That night, the mom’s are going out to celebrate 3×21 with Circle 21.  There is a big cocktail reception that’s going to feature some really crazy things, like the actors from the play RARE, video’s, and a photo exhibit by Trina Hoadley that may, or may not, include some very cool photos of little old me.  The mom’s have seen the pictures and they are blown away, but we can’t show them off until after the 21st.   I would be jealous about not going, but I get to hang out with MeMa, so it’s not so horrible at all!

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Can You See the Difference?

Guys, do you remember what you were doing one year ago today? Because I do…well, kind of.  At this time, one whole year ago, I was actually pretty out of it because I had just come out of my second open heart surgery.  You see, when I was born there were some big time problems with my heart – I had something called an AVSD and coarctation of the aorta.  When I was just 7 days old, and still with my birth parents, the doctors at Sick Kids did my first open heart surgery to make my heart a little better so that I could get strong enough and big enough to have the second surgery and on June 16th last year, they decided that I was finally ready.  Now, I don’t remember a lot of the details (mostly because I was on a lot of drugs) but the mom’s say that today was the first day of a very scary 3 months for them.  My heart surgeon was actually really happy with how well he was able to fix my heart, but as most you know, it was during this surgery that he officially diagnosed me with Pulmonary Vein Stenosis.  He was such a great surgeon though, that he tried to fix that (as best he could) at the same time, so that I wouldn’t have to have ANOTHER surgery, but because he spent so much time playing with my heart, it was too swollen for them to close my chest and I spent 3 more days with my sternum open to let the swelling go down.  Those three days were pretty scary for the mom’s.  I hadn’t even been home with them for 3 weeks and suddenly the heart problem that they had expected from me turned out to be way worse and now they were hanging out in a CCCU room actually being able to look down and see my heart beat.  It was pretty surreal.

 

And now here we are, one whole year later, and not only is my chest closed up all nicely and my heart is amazing and healthy and my right lung is strong and working hard, but I’m also sitting and seeing and have a tooth.  And I’m playing in the sand for the first time ever, and hanging out with the mom’s and their friends at the park and trying ice cream and slushies (thanks Rachel!).  I don’t know if you guys know, but us babies do a lot of growing up in one year…..

 

 

 

 

 

 

By The Numbers

98582827495: the number of people in line at the Starbucks at Sick Kids today.

189: the number of days before I need to see my cardiologist again.

99: the highest my oxygen saturation levels were at today (does anyone else remember when we were happy when it was 77?)

30: the number of seconds it takes for the technician to actually do an ECG.

10: the number of minutes it takes the technician to set up the ECG.

 

5: the number of minutes I had to sit in the chest x-ray tube for them to see that my heart and lungs look amazing.

2: the number of naps I got woken up from today so that people could poke and prod at me.

1: the number of lungs I have that are strong enough to do the work of 2 regular working lungs.

 

Just saying, it’s been a pretty amazing day.

 

Quick Fast

There are so many big and wonderful things that have happened in the past few days but I only have a quick fast minute to tell you all about them!

 

First of all, according to Health Canada, my name is Lily! It will take another 6-8 months before my adoption becomes finalized before the judge, but this is a first big step!  At least it means that all of my doctors and nurses will call me by the right name!

Secondly, we went to my first cardiology appointment since I was allowed to leave the hospital and everyone was super happy with how well I seem to be doing! I’ve gained more weight (14 pounds!) and gotten even taller. My oxygen levels are holding steady at 99-100% which is extra impressive with only 1 functioning lung!  It means that my right lung is kicking butt and taking names (and doing the work of 2 lungs really really well!)   They don’t want to see me again for another 2 months but at that appointment they will do an ECHO and an ECG and take a look at my veins more closely and decide what to do then. If they’re narrow again, then I’ll be booked for another heart catheter, but if             they’re the same then they’ll keep doing scans every 3 months (any shorter than that and the results all start to look the same). I even got treated like a bit of a celebrity because 1 of the doctors who was looking at me had just done a big presentation to some other doctors about PVS and he used my pictures! He was happy to meet me in person and even happier to see how great I looked (I think I surprised him a little bit!).

We also talked about the winter and it being something that the mom’s called “cold and flu” season and the doctor’s gave them some good tips called “common sense” to use for the next few months to make sure that I stay healthy and that my 1 lung doesn’t have to work any extra: make sure everyone who touches me washes their hands, the mom’s have to get a flu shot, don’t let any kids kiss or touch my face because they just might not have symptoms of being sick yet and just be smart about where I’m going and who I’m hanging around. It’s a lot of stuff, but at least it doesn’t mean any extra medicine!