Seeing Things Clearly

So Lily has glasses.  Sorry, let me rephrase that, Lily is rocking glasses.  During her eye surgery last year, our ophthalmologist was able to get a better look at Lily’s eyes and after our follow-up appointment a couple of weeks ago, she told us that Lily was probably a bit near-sighted and recommended that we try glasses.  I can’t tell you how hesitant we have been about this whole situation – Lily barely lets us brush her hair out of her eyes without a mini freakout so the idea of putting (and keeping!) glasses on her face actually made us laugh.  But, obviously it was something that had to be done so just before her neurology appointment we ordered a pair of miraflex glasses for kids.  You would know Miraflex if you saw them – they’re the kids glasses that have the strong strap along the back; they are rubber and come in a rainbow of colours.  Jess was kind enough to let me pick a nice bright purple, with the caveat that when we we buy her next pair she gets to pick out the colour.  I do wonder if I’ve made a deal with the devil?

We got the call yesterday that they were ready and as I happened to be at a meeting downtown the timing was perfect for me to grab them on my way back to my office.  I stood there for a moment, next to the super busy Tim Hortons in Sick Kids, took the glasses out of their case and marvelled at just how tiny they were – they literally fit into the palm of my hand.  I was so excited to get home and try them on her, and so happy with myself because, shallowly, I had been a bit worried that these glasses would change her looks and, while I know it’s a mother’s bias, I think Lily, sans glasses, has the most beautiful face – it’s tiny and delicate and so incredibly feminine.  I had wondered if the glasses would take away from that….

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I could not have been more wrong.  These tiny glasses look so wonderfully adorable on her tiny, delicate, feminine face.  With her hair pulled back, we could draw a lightening bolt on her forehead and she would be perfect for the part of little Harry Potter.  And while, I know that her looks are not important and this is actually all about her eye health, I can’t help but look at her and be happy that she looks just as sweet with them on as she does with them off.  The glasses change her looks, but only as a different shade of ridiculously cute.  And when she has them on and she smiles her little smirky grin, I’m an instant puddle.

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And turning me into a puddle is certainly to her advantage this week.  It seems that something with Lily’s internal clock has misfired and suddenly this week, the hours between midnight and 5am and now, “party time” in Lily’s world.  It started on Friday night when she woke up crying, which is very unusual for her, at midnight and then, to my chagrin, stayed wide awake until I finally coaxed her to sleep at 7am.  Saturday night went well, but then Sunday saw it happen again, wide awake from 11:30pm until about 4:30am.  So, we’ve reintroduced an afternoon nap which she had given up about 6 months ago, and pushed her bedtime a little later and we’re hoping that helps get a good couple nights of sleep.  Sadly, we’ve also learned the hard way, that she’s become too reliant on us to, “put,” her to sleep instead of putting herself to sleep.  I am 100% guilty of the mom trap that I swore I would never get caught up in! I have usually been the bedtime parent but ever since I went back to work, that time just became so special to me.  I wanted to keep patting her to sleep, or, even worse, letting her fall asleep in my arms – it was my way of keeping her little but it seems that I have created a monster.  So, once we know that she’s back into a routine, it’s time to break the habit and tame the beast.

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I also wanted to say thank you for those of you who reached out after my last post to send us good, “smart doctor” thoughts for my dad.  I’m hopeful that they’ve been working because he has an appointment with a new surgeon on Monday morning and I’m taking that as a good sign.  I’m trying not to overthink anything until we’re actually in his office and hearing what they have in store for him, but it is certainly easier knowing that there are so many people rooting him on.  Keep the thoughts coming – they’ve never been more appreciated!

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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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Looking Forward

The snow just keeps piling up and all I want to do is bury my body under 6 layers of blankets and my head in an amazing book, but already the sounds of September and school are starting to call.

A little background here.  When Lily was first placed with us, we had found an amazing preschool, here in Toronto, that would have been the ideal place for her.  It’s a half-day integrated program that focuses on the needs of children with developmental disabilities.  They provide a 1:1 ratio, have therapists on site, and they also help look outside of the school to access programs and funding that will assist the child to reach their maximum potential.  When we were moving the services from Lily’s foster mother to our home, we asked about this program and we were assured that Lily was already on the wait list.  So, we waited.  And then other kids that we knew were getting called and offered spots and we were still waiting.  Finally, our amazing OT looked into the situation and we were all shocked to discover that the referral had never been put in and Lily was not on the wait list.  At that time, we had to do a little scrambling to line up Lily’s therapies until she started kindergarten but luckily we have some amazing amazing people on Team Lily and there were no major gaps in her therapy time.

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The bigger downfall to this though, was that Lily did loose out on some of the amazing benefits that this program would have offered her.  In-home therapies are limited to how often they can see each child, and the preschool program provides that support on a daily basis.  At first, this wasn’t a huge impact – Lily was still recovering from the delays that her cardiac arrest and brain injury had caused and so we weren’t in a hurry to push her to do more than she was ready to do.  However, as I mentioned before, we’ve been seeing her make these huge leaps in her abilities and it’s clear that this kind of program would, now, be appropriate for her.

But now she’s 3.  Which, of course, means that preschool is no longer really an option and she is supposed to start JK in September and my freak-out has begun.  As much as I would love to try and stay positive about our school board and what resources and support they will be able to offer Lily, I do worry that it just won’t be enough.  I know that she is technically the right age to start school, but I do worry that she is not even remotely ready to start school.  School is big and everyone knows that there are not enough resources and supports to go around.  Lily is non-verbal, has limited gross and fine motor skills and I’m very worried that she will slip through the cracks because she’s easy.  It’s easy to put Lily down on the floor and let her play happily by herself, and in a classroom – even a small classroom – where there are other, busier, children, I can see how her needs could get overlooked.  Even with the hope of a support staff, the pessimist in me worries about the ability of that staff to get Lily to move forward.  We’ve had some amazing therapists and even they can find working with Lily challenging; with her developmental delays, her vision and her gtube, it’s difficult at times to find something that will motivate her enough to want to do the work.  If you don’t have the right level of patience, it would be easy to find her frustrating and give up on her.  We’ve had therapists who have gotten verbally frustrated with her and we’ve shown those therapists the door. We always say that Lily will do everything in, “Lily time,” but unless you’re willing to truly accept that, she is challenging.  And I am afraid that our school board won’t be able, or won’t have the resources, to find someone who really understands how to work with her.

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So, all of my hopes are in a single basket now (It’s like I’ve never listened to anything I’ve ever been taught!).  Now that Lily is 3, we’ve had to transfer her services (Occupational Therapy, Physical Therapy, Feeding assistance) from CCAC (Community Care Access Centres).  We’ve been lucky enough to have access to Holland Bloorview Kids Rehab Hospital – we see a developmental paediatrician there who will help to coordinate which services Lily will need until she’s 18.  As we were discovering all of the amazing things about Holland Bloorview (and there really are too many to list), we also discovered the Bloorview School Authority, which provides education to the children who are in-patient at Holland Bloorview for rehab.  In addition, they also offer an Integrated Education and Therapy program for JK to Grade 1, which is the exact type of program that we think could help Lily thrive.  The school offers physical, occupational and speech therapies alongside their educational programming.  They would coordinate with Lily’s therapists at Holland Bloorview to create an individual plan to help her build on the gains we’re already seeing. It’s a full-day kindergarten and transportation is provided through the Toronto District School Board,  In summary, it’s perfect.

Sadly, just because it’s perfect for Lily, doesn’t mean that it’s not perfect for a tonne of other children as well, and as such, the space for new children each year is very limited.  We were happy that we made it through the intial screening process (although I’m sure that has to be credited to all of the pushing that Jess did – she made sure that every single therapist or doctor who could give us a recommendation, did give us a recommendation!), but now we’re stuck in waiting limbo until a final decision is made.  In the meantime, it’s off to kindergarten registration for us.  We are very lucky because the school less than a block away actually houses our districts diagnostic kindergarten program so we wouldn’t need to worry about transportation to another school.  Plus the school itself is quite small, so it has the exact feel of a neighbourhood school that I want for Lily.  The school I went to as a child really felt like the centre of a community, and I do want Lily to grow up being immersed in community; it was one of the main reasons we reasons we choose this neighbourhood when we moved.  I am trying, really really trying, to stay positive and give in to the belief that whatever happens is meant to be.  That, if Lily isn’t accepted into Bloorview, that there is a reason for it: one that we don’t see and may not ever see, but that’s there regardless.  Although, I’m really keeping my fingers crossed that our paths our meant to head towards Bloorview – fingers crossed okay?

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