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!

Thankful

With all of the social media that surrounds us, it was impossible to miss people discussing the things they were thankful for this weekend.  Everywhere I looked people were sharing tidbits of their lives and celebrating the small things that make them so fulfilling.  So while I’m a few days behind, here is my list for this year:

1.  My Wife

I may not always be the wife that I hoped to be.  I can be selfish and lazy and the one who has to live with the consequences is Jess;  If I do anything different in the next few years, it will be to make sure that the actions in my life show Jess just how grateful I am that she is here with me, loving me in spite of myself.  There is nothing I love more than watching her and Lily spend time together – watching them giggle and make funny faces at each other.  I used to be worried that I would be jealous of the fact that Jess is the stay-at-home mom and the bond that would grow between her and Lily, knowing that their relationship would be different than the one that Lily and I will have.  But, it has turned out to be the exact opposite: watching her being an amazing mother to Lily just makes me fall in love with her over and over again.  I’m just thankful that she keeps me around to be part of that.

2. Our friends

We are so incredibly lucky to have the friends that we do in our life.  We don’t have peripheral friends – we have in your face, sitting in our living room while we clean up Lily vomit, stay for dinner and then the rest of the night, pop over on a random Sunday evening, friends – we have family. I have been constantly overwhelmed by how much love and support they give us and how they are just always there.  It doesn’t matter what we need, they give it.  They give it even when we don’t know what we need.  Between MeMa, Chocolate Auntie, Randalls, Telly’s, Steve’s, Charlie’s family, Birthday Twins, Work Girls, and the people who know that a CD of ABBA songs is the best gift ever, our cup runneth over.

3.  Healthy Lily

This one is self explanatory, but I need to emphasize it: it has been more than 2 years since we’ve had any hospital stays.  For a girl with 1 working lung, a repaired heart, who relies on a g-tube, has funky vision, a brain injury & Down Syndrome, this is a miracle in and of itself.  It’s one that we are aware of every single day of lives and we never take for granted.  Every time I walk the halls of Sick Kids, I say a little word of thanks that we’re not living there again.  I see people walking around with their red parent badges, who are living on food from the Terrace Cafe and I ache for them (and their back and necks – the pillows are awful!).  Every time another doctor tells us that Lily is doing better than they ever expected, I know that were are in the midst of something incredible.  And while things are not perfect – eyes need to be fixed, it turns out that she officially has a genetic abnormality that leads to deep vein thrombosis (although we could have told them that 2 years ago),  and you know that pesky one lung thing always weighs on our minds, we are thankful for each day that she is healthy and strong.

4. Community

We are so lucky to be part of a community of parents that openly celebrate Down Syndrome.   Jess and I often speak about how we don’t always fit in places because we chose this life: we knew Lily had Down Syndrome and knew what that would mean for our lives.  For other parents, the diagnosis often happens at birth and they are left to grieve for the child they expected to have.  It’s an incredibly difficult process to go through but what emerges is actually awesome.  These parents come out of their grief, roaring with pride.  They embrace this unexpected life with so much passion and grace.  They come together and support one another, regardless of how different their lives were before.   Last weekend we were fortunate enough to be part of a photo shoot for Circle 21‘s annual calendar.   While it was originally supposed to be outside, the weather did not cooperate and we ended up in one of the co-founders living room.  As I sat there, literally in the middle of 15+ kids with Down Syndrome all running around, I realized that it’s impossible to contain the kind of raw joy our children possess – the laughter, the giggles, the dancing, the openness – it was a room filled with the very best parts of our children and, not for the first time, was I so thankful that this is our life.  And the very best part of that, was that what I was feeling was echoed in every single pair of eyes that I met when I looked around that room.

5. Family

Lily knows love.   Jess and I know love.  Our family has been shown love over and over again and it’s impossible to doubt.   My nephews beg to see her, run to her when she comes into a room and are more gentle with her than with anyone else.  It’s as though they instinctively know that she may need to be a little protected, and the love they have for her is so incredibly pure that it actually makes my heart swell.  My sister, who is my heart and soul, and her husband, love Lily like she is their own.  I will never, ever, forget the night that my brother-in-law stayed at Sick Kids with Lily, just holding her and rocking her and keeping her safe so that I could just have a little bit of rest.  I actually stood and watched him at the door before I came back in the room because it was such a perfect moment to me of knowing that there are people out there who love Lily with so much of their hearts.  Between grandparents, aunts and uncles, cousins who beg to come over and see her, I know that she will always be surrounded by love, she will never know what it’s like to not feel accepted and cherished.

Today, specifically, I’m thankful for hot sunshine and cool breezes that make walking the dog an experience and not just a chore.  I’m thankful for chocolate chip pancakes for dinner and salted caramel hot chocolate after a long afternoon at Sick Kids.  I’m thankful for good books and a good nights sleep and the fact that I get to wake up tomorrow, and everyday after that, living this incredible life.