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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Just Say It

You’ll excuse me if I self-indulge for a minute or two.

Sometimes being Lily’s mom is hard. Please don’t misunderstand, I don’t think there is a mother out there who can’t say that it is a hard job – balancing responsibilities, conflicting needs, finding a balance that keeps you sane while still meeting the needs of those who depend on you – it’s a job for a superhero. So, while you’re reading this, please don’t think that I think our life is any harder, I’m just writing from my own experience as that’s all I know. That is what I mean by self-indulgence.

So yes, sometimes being Lily’s mom is hard. I recently mentioned that there is a significant difference between Lily’s chronological age (2 years, 9 months) and her developmental age. When I speak of that I mean how she is doing when we look at how she is developing as a person – hitting milestones like crawling or walking, her ability to speak and to understand – the skills that a person needs to become self-sufficient. While Lily may be almost 3 years old, developmentally she is closer in age to an 8 month old baby. Lately we’ve been incredibly pleased with her development as she moves into the fun age of a toddler – her new interest in eating, her fascination with the dog, totally getting a kick our of other kids – these are all amazing things. The first time that she laughed, a full out belly laugh, or squealed at the anticipation of being tickled, we stood there in shock and awe at how fast these developments are happening and how quickly she’s developing her own unique personality.

But, anyone who has ever been around a baby, knows that they also come with their fair share of frustrating, want to pull your hair out, moments and we’ve been experiencing that for more than 2 years now. That’s when it can get hard: when she is screaming for hours and won’t stop crying – can’t stop crying – and you wish for just that one moment that she could communicate; that she could just turn to us and say, “dudes, I am totally constipated, I have a tooth breaking my skin and you left me alone with these crazy people in white gowns who stuck a needle in my arm.” And while I would never, ever ever ever, change a single thing about that awe-inspiring little girl, there are times when the challenges become overwhelming and I’m left feeling frustrated, disappointed in myself and wondering if there isn’t something that I’m missing, more I could be doing. Most of the time we’re lucky as Jess and I rarely get to this point at the same time and we can be each other’s touchstone – a guide out of the dark spots. But this week has been challenging, in a no sleep, endless crying, wish we could understand what is wrong, kind of week. There have been tears – from Lily and from me and I would happily trade a crawling milestone for the talking one, even for just a single day.

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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.

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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.

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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?

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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.

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New Year and New Adventures

I hope you haven’t missed me too much.  I’ve been very busy blossoming into a new little girl over the past few weeks and it’s taken up most of my time and energy.

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Guys, did you know that you could reach for things? That you don’t just have to wait for one of the mom’s to get off the couch and bring the toy back to you, you can actually just move and get things yourself? I can’t believe I didn’t figure this out before, but I know now and there’s now stopping me! I reach for everything – things I shouldn’t even be allowed to have but the mom’s get so excited that they let me have whatever I want….even the cat!

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I’ve also been working hard with my OT Kristen.  I’ve decided that 2013 is going to be the year when I grow in leaps and bounds and abilities! Kristen came in to our first session of the year, took one look at me and started to laugh.  She told Mama C that she had been worried before Christmas that I had started to plateau again and she was going to have to start working out some new techniques to get me moving forward again.  But then she came in and saw all of my reaching and babbling and knew that we were going to be okay! So we’re back to working on great things like turning pages and stacking blocks and eating! The mom’s keep letting me try really great things – so far I like Sugar Donuts the best, but sweet potato and tomato sauce are pretty good too.

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I’m also working hard to make my eyesight better.  My brain injury caused something called a Cortical Visual Impairment (you can read more about it here, because it’s a a long thing to explain).  If you read the description, you’ll see that a lot of the symptoms are things that you may see me doing.  One of my big symptoms is strabismus, which causes my right eye to turn in towards my left eye.  Clearly this is not good in the long run, so for the next 6 months, for 2 hours a day, I have to wear a patch over my left eye to remind my brain to pay attention to my right eye.  It was a bit confusing at first because my brain injury also caused the left side of my body to be a bit weak so we kept thinking that it was my left eye that needed work, but we just have to keep remembering that the injury switches above my neck.  Bodies are crazy crazy things.

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Clearly this was the mom’s first attempt – wrong eye AND wrong direction. They need help!

Lastly, I just need to clear up a little rumour: I am NOT on the cover of Today’s Parent (although I don’t know why I’m not, I think that someone should really inform them that I would make an amazing cover model).   Today’s Parent knows that parents love to see their children everywhere and so they allow anyone with a subscription to upload a photo and it will be used as the “cover” for the December issue.  The mom’s ordered an extra copy for Gramma and Pa and somewhere they got confused and thought that it was real.  I wasn’t trying to trick all of you – but it was pretty funny!

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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

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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…

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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….

Becoming a Girl

A mom post tonight….

I was having a conversation with Lily’s OT this week while we were having a joint visit with our physiotherapist – a special treat.  We were talking about how, when learning new skills, it has taken Lily a long time to figure things.  She would plateau for ages but then one day it would just click and suddenly she could do it. There has been no middle ground with her – she can’t do it until she can and then she’s amazing at it.  We had always known that kids with Down Syndrome do everything that a “typical” child does, they just do it a bit later, and Lily seemed to take that to her own level – we affectionately call it, “Lily time”.

But lately, the gains seem to be coming faster and faster.  Somewhere in between learning how to sit and becoming aware of her mouth, she’s been jumping ahead in leaps and bounds.  The baby who was so silent now chats up a storm, entertaining herself for hours.  Earlier this week we saw a girl on the edge of creeping and we watched in amazement today as she stood on her own (with a little help from the couch) for about 30 seconds (especially impressive since not even a week ago if you tried to make her bear weight on her legs she would scream murder).

Each and every time she moves forward in life, I’m reminded of just how proud I am of this little fighter and how far she has come.  Her personality has started to shimmer through – she’s quick to share a giggle when she’s delighted by something new and equally as fast to tell us when she’s done. Her eyes light up when she sees us in the morning, and at night has learned that if she just rolls around and chats to herself she doesn’t have to fall asleep right away.  She plays the xylophone like a concert pianist and finds herself terribly amusing.  Before our eyes, she’s moving away from being the strong fighter of a baby and into this tiny lady with so much determination and an fierce independent streak.  But at the end of the day, when she’s tired of working, she brings her head in on my chest and her hand plays with my necklace and reminds me that she’s still just a little girl.

Sweet Potatos and Joey`s Birthday

So, a little while ago, I told you guys that I had this cold.  It was super annoying because I couldn’t really breathe and I was all sniffly and gross.  On top of that, it’s already hard for me to swallow sometimes (because of my low muscle tone) that when I’m sick it makes it even harder.  This was especially frustrating because my OT at Sick Kids, Lisa, had given us the green light to start letting me eat all kinds of food, but then I couldn’t because I couldn’t swallow them properly.

But luckily this week, the cold has finally gone away and we’re back on the food train!

I really love eating, as long as I think it tastes yummy.  The mom’s gave me banana cream to try and I got very upset by that (it tastes gross).  But when they give me apple sauce or sweet potato, I just go crazy!  Mama C even let me try a bunch of different things at Easter dinner last week and they were so good…I got to have actual turkey and some stuffing.   She told me that we can have them again at Thanksgiving and even though I actually have no idea what that meant, I’m really looking forward to it!  And just in case you’re worried that the mom’s are just spreading food on my face and telling you that I’m eating, I even have a video to prove how much I’m loving it.  (Please excuse my hair though, I’m battling some cradle cap again and so I have a little olive oil going on – not to mention the goofy looking clips holding it out of my face).

This weekend has been pretty exciting, because I was a guest at my very first birthday party (besides my own).  My friend Joey is turning 3 years old (he’s totally cool like that) and so today I put on my party dress, did my hair all pretty and strapped on my favourite shoes!

When we got there I couldn’t believe how many other kids there were! I got to make some really great new friends: Ava and Heidi and Ella and especially Addison (she’s little like me).  I was a little too excited though, because after hanging out for half an hour, I needed a nap.  Luckily, between Michelle, Lorraine and Theresa, I had no trouble staying cuddled enough for a good sleep.  Afterwards, I even got to play with some toys that I’m usually not allowed to play with, like a bouncy exersaucer (don’t tell my OT Kristen, okay??).

But mostly, it was a pretty exciting day because I really do love my buddy Joey a lot.  In fact, I love all of his family a bunch.  My Theresa has known Mommy for a long long long time and I know that they have a special place for our little family.  Joey treats me so very gently, even though he can be tough with bigger kids, and Joey’s daddy Jason is one of the best cuddlers I know.  He calls me his Pretty Princess and I like that he has a special nickname just for me.  And my Theresa, she’s one of the coolest grown-up’s I know.  She loves to laugh with the Mom’s, but then she always complains about having to pee.  But, in spite of that, she also makes the coolest cakes around! You might remember that she made my beautiful birthday snowflake cake (guys – it was sparkly!!) and today, for Joey’s cake, she made a super cool Thomas (and Percy) cake!  I think I’m pretty lucky to know such great people.

Milestones!

It’s a big deal kind of day. After months and months of working super hard, I finally rolled over from my back to my tummy! And even more, I was able to clear my arm and propped myself up.

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