A Challenging Post

I find one of the most difficult challenges about parenting a child with special needs is trying to find a work/life balance in a world where these 2 things don’t always want to play nicely together.  I’m incredibly fortunate that my job offers flexible hours and it is a benefit that I value over any dollar figure.  This has allowed me to be more involved with Lily’s day-t0-day care (therapy, medical appointments, etc) than if I was work a more tightly-scheduled job.  And while I certain have chunks of time that are much busier and require my focused attention, in general the balance comes somewhat naturally.

When it does get difficult though is when parenting Lily actually requires 2 sets of hands; when you need a second person to unhook her feeding tube as she’s starting to vomit because otherwise it will get pulled loose as you’re trying to keep her from vomiting directly onto you and what little formula that is still in her stomach will leak out and be wasted.  I’m not saying that 1 parent couldn’t do it alone.  I’m in awe of the single parents who live this life – hell, I’m even in awe of Jess most days as she does it without me, but when Lily is sick and is literally vomiting up every meal before it’s even half way done, I’m grateful that there can be two of us.

It’s a different world though and sometimes difficult for people who aren’t living it to understand.  I don’t always feel that my words can give a proper picture of what those days are like and how stressful doing it single-handedly can be.  This is when my guilt sets in.  Without actually living in my life, I can see how it may seem like having 2 parents at home is a luxury – an over-reaction, especially during the times when it comes along suddenly and I’m walking away from work under the guise of “vacation time,” to just be at home.  It’s impossible to see the internal struggle that I feel between feeling the need to be at work and making sure my responsibilities are covered there, while being just as present at home where I’m needed just as much.  Both parts of my life are important to me – I’m one of the lucky people in life who has been able to make a career from something I love, but at the same time, I know that family and my responsibilities here are always going to win out.  And while I know that’s not unreasonable or beyond any expectation, I still can’t help but feel that pull – the one to convince people that I haven’t just blown off work for a week because being at home with Jess and Lily seemed better than being at work.  In weeks like this, I would far rather be at work because it means that everything at home is running smoothly and there’s nothing happening that’s causing us to worry, or anything going on that needs the extra support.  What’s almost amusing about this is that, when Lily was smaller, we were getting some funding for some respite – so that during times like this, we could actually bring in some extra help instead of having me leave work.  But, since Lily was smaller and not as active, it was easier for a single parent to take care of situations like this.  But now that she’s older and has made so many developmental and motor gains, but fewer communication gains, we could use the respite, but don’t qualify for any of the funding.

When Lily is sick, we struggle to figure out where the cycle is happening: Is she crying because her stomach is upset and that’s what’s making her vomit, or is she vomiting because she’s crying so hard? With almost no verbal communication skills, we’re at a loss for trying to get to the bottom of it: she can’t tell us that her stomach hurts and so we’re constantly watching for other clues – anything that will give us even the smallest hint of how to try and break the cycle.  Because we don’t have the ability to communicate with her, treating her symptoms is almost a guessing game.  We start with one idea and then keep rotating new methods in or out until we find something that seems to do the trick: suction her nose before each meal, try gripe water or tylenol to help with pain, replace her formula with electrolytes so that she’s at least staying hydrated (but then causes us to worry about her calorie intake), or slow the rate of her feed down so that her stomach doesn’t feel like it’s being force fed (which then causes the problem of getting enough calories in for the day).  At one point this week we actually considered dividing the amount of formula for each feed in half and doing 8 very slow feeds instead of 4 very very slow feeds, but a very slow feed takes at least an hour, which means she would literally be hooked up to her pump continuously, and since she needs to sit still while she eats, we realized this wasn’t even a remotely feasible option.  So instead, one of us will snuggle up with her on the couch (because she’s sick and just wants to be held), and hang out there for the full hour, ready to jump when she starts to vomit.  All while the other person takes care of the rest of our lives: laundry, meals, medications, basement and backyard renovations, and staying close enough to be that second set of hands or to take her once the meal is over, because at that point the mom on the couch has to take a bathroom break.  Beyond this is just our general anxiousness when her illness is respiratory, as we’re constantly watching for signs that it’s not progressing into anything more serious: we’re watching her breathing, the colour of her nail beds and lips, we’re worried that we’ve missed something and the vomiting is actually a sign of heart failure.  Sometimes the stress alone is enough to needs both mom’s around, so that one of is always calm in case the other one is freaking out.

Fingers crossed that this bug moves on soon….

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What is Lily Looking For?

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She’s looking for number 100!

100 what, you may ask yourself?

A while ago, we asked the people we love to take a few minutes out of their lives to register to become organ donors.  Originally we set our goal at getting 25 people to register.  We reached that goal and then decided to double it.  Before I knew it, our message had reached 50 people and we decided to double it again.  And now, after checking in tonight, we are at 99 people – one person away from reaching this incredible number!

In Ontario, there are no more cards issued with your driver’s licence asking you to indicate whether you wanted to be an organ donor.  Now, if you want to be an organ donor, you register online with the Ontario-wide Be A Donor program.  You just need to have your health card and 5 minutes of your time and then your choice is linked to the rest of your health card information – simple and straightforward.  Beyond that, it means having the conversation with your loved ones, to ensure that your choice is fully understood.  Sadly, as we all know, so many deaths happen unexpectedly and we don’t have the chance to work out the logistics – those decisions are left to our friends and family.  It can be hard sometimes to have the conversation before hand, it’s such an easy topic to avoid, but it’s such an important one to have.  We’ve had it in our family – multiple times in fact, when dealing with health issues that have come up.   We know who wants to be an organ donor for life-saving purposes, and who would donate organs to research as well – when my Aunt Gail passed away a few years ago, it was an easy decision because she had been very clear about her wishes.   People avoid having the conversation because it’s hard – it’s dealing with unpleasant subject matter, but it’s so much easier to have the conversation now, when that’s all it is – a quick chat – then having to make that decision on someone’s behalf without being sure of what they would want.  By doing these two things – registering through Be A Donor and sitting down with your family and talking it out – it’s one less thing that needs to be “decided” – it just becomes fact.

And sometimes we all just need a little fact to hold onto.  It’s hard sometimes to watch the news, or listen to people speak, and not feel slightly overwhelmed and powerless.  I heard it over and over again with the recent election: why vote when all of the choices are awful? Why should I waste my time when they don’t listen to what I want anyways? This is one thing that we can control, that we have the absolute power in.  Beyond that, to hold on to the fact that something you have chosen is going to directly make someone’s (lots of someones!) life better – if you think about it, just allow yourself to really imagine the gift this person will receive – that’s a pretty amazing image to  hold on to.

So please, if you’ve reading my other pleas and you haven’t registered yet, just grab your health card and 5 minutes of your time before going to bed tonight and register.  If you’ve been reading my pleas and you’ve already registered, then as soon as you stop rolling your eyes and telling me to stop talking about this already, please take that extra 5 minutes to share this post with someone, anyone and hopefully we can hit reach our 100 person goal – and then I can double that again!  With your help, we’ve already done it twice and as they always say, “the third time’s the charm”.

Do it for you, do it for someone else, or Do it for Lily.

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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Which Mom Am I?

When your child has a special need, regardless of whether it’s a developmental disability or a medically based complexity, parents want to champion these issues: to bring their knowledge and experiences to people so that we can educate and bring awareness to what makes our child special.  My problem is that I don’t know where to put that focus.  Am I a “down syndrome mom”, or a “heart mom”, or an “adoption mom”?  Lately, I’ve been finding that I really want to do more, but if I’m going to choose one area to throw my voice behind, how do I decide which mom I’m going to be?

One of the problems we have in just picking one, is trying to fit in.  I’ve mentioned it briefly before, but we don’t always know where the best place is for us.  We’re lesbians who chose to adopt, as opposed to trying to concieve our own biological child – a little more rare in the adoption world, where the saying is that “you come to adotion through loss.” That wasn’t the case for us – we always knew that we were going to adopt and were excited about that fact.

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We chose to adopt a child with Down Syndrome, in fact, leapt at the chance to adopt a child with Down Syndrome.  We often feel that some people are confused by that choice; in fact, we had one adoption worker who asked us directly, “you know that you could have a normal child, right?”.  We (well, Jess more than myself) had experience with Down Syndrome that helped make it an easy choice.  We knew that having a child with DS, along with the challenges, would bring us incredible joy.  But, for other DS parents, this wasn’t their experience and it’s hard for us to relate to the grieving/acceptance that they had to work through, and I think it’s hard for them to relate to us as well.  We love being a part of the DS community but sometimes it’s easy to feel a little like outsiders.

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Medically, as far as we’re concerned, Lily’s heart is actually a miracle.  I remember, so clearly, sitting in the small room with Lily’s surgeon and him confirming the PVS diagnosis with us.  He told us that our life was going to go one of 2 ways: 1) This was just how her veins are and she would have no other issues.  He quickly followed by saying he really didn’t think that was our road; or 2) The veins would close up completely and the disease would be fatal.  He couldn’t give us a timeline or any more information but that was it.  I remember, sitting for hours on my phone, trying to find ANY information I could about PVS and just being bombarded with the same sentence in every report: “PVS is extremely rare, progressive and usually fatal.”  But we’re here, 2.5 years later and Lily is winning.  Her CHD is the scariest part of our life, but when compared with other heart warriors, we’re actually so lucky.  Her original diagnosis of an AVSD and Coarct are common in kids with DS and the surgeries to fix those issues have held out and her heart – if you look at just her heart – is amazing.  I sometimes feel a sense of survivors guilt when it comes to being a “heart” mom because she has been doing so well.

The other issue is that with Lily, all of this is so interconnected that it feels impossible to seperate them and just focus on one. In my head, I compare her journey to a party. She started at the Down Syndrome Party (guests included low muscle tone, delayed motor skills & speech but a serious love of dancing) and that came hand in hand with her original heart conditions; her heart brought her PVS to the party; the PVS may have asked the Cardiac Arrest to come along or it just decided to crash the party to create some havoc, but it brought it’s groupies: HAI (hypoxic-anoxic brain injury) and CVI (cortical visual impairment).  Suddenly, they are all in this one gigantic room and you just have to shrug your shoulders and start handing out snacks.

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For this week though, National Down Syndrome Awareness Week, this is where my heart going to be.  The Canadian Down Syndrome Society has an amazing campaign going this year that highlights 14 (7 pairs) of people who truly celebrate Down Syndrome.  I’ll try and highlight some of my favourites over the week, but if you’re going to start anywhere – start with Max and Libby (who personally sum up exactly what kind of relationship I want Lily and her siblings to have).  As well, make sure you check out the CN Tower on November 4th as it’s shines blue and yellow to celebrate this amazing week!

Lastly, because it’s been a while, I just thought I’d share a little love from Lily and Gus.

Lily’s New Wheels

There are certain specialists we see at Sick Kids that leave us less stressed than others.  I like to think of these as “maintenance” appointments – doctor’s we need to see because there was an issue in the past or things that are just part of life and require some follow-up: our regular pediatrician, opthamology and our yearly visit to the thrombosis clinic.

Thrombosis is usually an easy appointment but we’re happy to go.  During each of Lily’s open heart surgeries, she has developed some sort of blood clot: after her first surgery, it was a deep vein thrombosis in her right leg, and after her second surgery it was a venos thrombosis in her left leg, along with a thrombosis on the tricuspid valve in her heart (that was the very scary one that they found on a Friday afternoon and it had miraculously cleared itself by Monday morning, but not after Lily’s cardiologist basically told us that she could have a pulmonary embolism at any moment).  The thrombosis clinic follows Lily to watch for effects of these clots and to ensure that if there are any (because they can cause problems even years later) that we have a plan in place to deal with that.  The appointment itself is very straight forward,  they measure her legs – both the length and circumference – to ensure that both legs are growing at the same rate; they watch for signs of redness, swelling, cyanosis – any symptoms that show there is an issue.  For a while after they discovered the clot on her tricuspid valve, we had discussions about starting her on a drug called Enoxoparin, which is a blood thinner that Jess and I would have delievered through a daily injection.  Luckily for our nerves, after discussing with cardiology, it was decided that we would start with baby aspirin and as long as everything held steady we would stay with that.  I’m happy to say we’ve never had to revisit the option of Enoxoparin!

After looking through Lily’s medical history, they also asked us last year to do full blood panel to conclusively determine if there was something about Lily’s blood that could be the reason behind these issues.  It took us a year to get the results and it turns out that not only does Lily have an increased Factor VIII (which determines how fast the blood clots – in hemophilia there is a decreased Factor VIII, which means the blood doesn’t clot. Lily has the opposite – her blood clots too quickly), she also has a Factor V Leiden (a mutation of one of the clotting factors).  Both of these combined have pretty much guaranteed that she will face issues with blood clots for the rest of her life.  This, in itself, is not anything terrifying, but just another thing that we have to keep tucked away in the part of our brains we call, “Lily’s Medical Mumbo Jumbo”, because it’s information that is important to have when we’re looking at subsequent surgeries, if she ever needs to go on birth control or even if we ever want to take a flight somewhere. What’s amazing to me is that we can even get this information from a simple blood test (well, simple in theory, not so simple for the poor technician trying to draw Lily’s blood).  It’s like opening a door wide open for us when we don’t know all of Lily’s genetic family medical history.  For us, it’s especially cool, because now we can pass this information along to her birth parents so that it’s something they can be aware of for any of their other children.

We’re slowly leading up to Lily’s next ECHO and cardiology visit.  Sometimes it’s very hard not to start worrying about what may come up and to remind ourselves that we just need to look at Lily to see how well she’s doing.  With the change in her formula she’s clearly gaining weight, and energy. You can tell just by watching her for 10 minutes that she’s no longer content to be a passive participant in her own life. She’s aching to get moving and, as such, has developed quite the streak of independence. She doesn’t want to just sit on our lap and be entertained, she wants to be on the ground, exploring everything. She’s constantly trying to pull herself up and I have no doubt that one morning, sooner rather than later, I’m going to be greeted by a little girl standing in her crib.

So, to harness this new energy, we – along with Lily’s OT, decided that the time was right to try a walker. It took a couple of weeks but a loaner was dropped off at our house this week and they made sure that it fit her properly. We’re going to try it out for a week and then, as long as we’re happy with it, we will out in the order for her own. I would love to say that we strapped her in and she did a loop around the neighbourhood but she did figure out how to take a few steps, which is actually way more than we thought she would immediately get from it. Fingers crossed that with some work and practice she and her new set of wheels will be toddling all around!

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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.

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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!

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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.

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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!

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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!!

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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…

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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.