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….

IMG_1173

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.

IMG_1197

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.

IMG_0975

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!

IMG_9164

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!

20131024-222905.jpg

20131024-223129.jpg

20131024-223150.jpg

No More Tears

Today was the first of the two eye surgeries that Lily needs to have done. We, mistakenly, thought that they were going to do both procedures at once but since that is not the plan we went ahead with the first one today – a simple tear duct probing. Lily, along with a ton of other kids, has had an issue of blocked tear ducts. It’s especially common in kids with Down syndrome and a lot of the time it resolves itself. When it doesn’t, as was the case with Lily, they go in and do a simple procedure to unblock the tear duct. We were actually shocked at how fast it was (less than 45 minutes) and while they had originally recommended that we spend the night, anesthesiology was so happy with how she held up that they let us go home right away. While we were originally a bit hesitant (our post-traumatic stress coming out), now that we’re home, we are grateful to sleep in our own beds.

photo 1

It was an odd place to be in emotionally today. We knew, logically and without a doubt, that this was the easiest surgery that Lily has ever had and we love her ophthalmologist so we knew she was in great hands. But we kept flashing back to June 2011 and thinking something similar – this is a regular surgery, it’s common for kids with Down syndrome and they see it all of the time. But that surgery changed our entire lives and while we knew that it wasn’t going to happen again that worry is a hard one to put to rest. It certainly didn’t help that as we were having our last discussion with the anesthesiologist a code blue was called in the recovery unit. It was just another reminder than even when you’re not expecting it life can hand you totally new cards. But we had to out those fears aside, kiss our girl goodbye (who barely even noticed we were gone – she went happily with the nurse!) and hope that we had time for lunch (we barely did).

photo 3

So now we’re home – safe and sound and with way fewer tears than before. Lily did not enjoy the recovery process and cried/shrieked for the entire car ride home. It wasn’t until after she crashed for a good long nap (with me right beside her) and got some food in her tummy that she started to come around. And now, even though she still seems a little punch drunk from the medicine, she’s back to her funny ways. In the end, while it wasn’t a good day, it certainly wasn’t a bad one.

photo 4

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.

blackwhite

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!

lovingmorse

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.

kristin

sugardonut

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.

patchy

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!

magazine