Great Big Huge Leaps

The last couple of weeks have shown some huge developments in Lily’s developmental skills.  One of our new therapists from Holland Bloorview has just been this incredible ray of sunshine in our lives and it would be easy to chart Lily’s developments alongside Catherine’s visits.  We’ve been lucky to have some incredible therapists working with Lily, but something about Catherine just brings out the best in Lily.  She doesn’t coddle her, makes her expectations clear and is incredibly strict but also maintains this wonderfully sweet and calm demeanour.  From her first visit, Lily has responded to her in a way that we have never seen before and it is actually impossible for me to put into words how thankful we are for her appearance in our lives.  So, instead of trying to come up with words, which I fear will just sound flat, I’m going to leave this one to pictures and videos tonight…

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They had been working on standing, unassisted, for a couple of weeks.  One morning, with just a little balance help from Elmo, she got it.  The first time, she got it for about 3 seconds – and that was counting fast.  Catherine suggested we try for 5 seconds.  20 seconds later, Lily finally sat down.

A week later, Jess called me on FaceTime while I was at work.  All she said was, “watch this…”

Fast forward to this week. Jess called me on FaceTime again.  “I thought it was a fluke” she told me and then turned the camera onto Lily

I watched, in amazement at our girl, who has worked so hard to keep anything firmly in her hands, see the magnet, grab the magnet, hold the magnet and then decide to put it in the bowl.  All of those teeny tiny baby steps finally collided into a great big huge leap and a Momma, in tears, watching her little girl grow.

Life is good. Clearly someone deserves a nap.

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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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I’m Still Standing

In this case, a picture truly is worth a thousand words….

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Beyond the absolute mess of our house (full on renovation mode, with everything from the basement now taking up residence in our living room/storage container), all I see is this: our incredible, amazing, awe inspiring, reminds me of what a miracle she is everyday, little girl, doing what some people never thought she would do.  She’s doing exactly what we said she would do: pulling herself up to stand, on her own, in her own time.

Our world works in Lily time – everything she does is slow but deliberate.  She thinks every single step through and takes her time to look at all of the pieces; figuring out how to mesh them together in just the perfect order, and then one day – she just stands up, like she’s been doing it her entire life.

The crib got lowered tonight.  We’ve been waiting 2 years to do that and it may be the best milestone yet.

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….

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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A Little Bit Naughty

The mom’s would be a little mad if they knew I was writing this post, but there’s just something I think you all need to really understand: the mom’s are a really bad influence on me.

You know, it started off pretty innocently.  When I spent so much time in the hospital last summer and Mama C was working really hard to get me to drink from a bottle, Mommy decided to widen my palate with my first taste of Swedish Berries.  I love to stick my tongue out and taste that pretty red sweetness.  Then when I got home and we went to the CNE, the mom’s let me have a taste of ice cream.

Other times, they let me go outside without a hat! I really like the feel of the wind on my face, so sometimes the mom’s let me sit outside for a little while and just enjoy the wind.  This week especially, while the weather has been so nice, the mom’s have been really great about letting me just enjoy the sunshine.  When Gramma and Pa came to visit this week, we waited outside and the mom’s didn’t make me wear a hat OR a sweater! (I thought Gramma was going to get really mad!).

But the time that the mom’s are the worst influence is actually at night.  Sometimes, when they are hooking up my g tube for my last meal of the night they have to move me around a little bit to get to my tube and I wake up a little bit.  Now I don’t know much, but I do now that I’m a growing girl and I need my sleep.  But apparently the mom’s don’t agree: they think that this is the time for them to pick me up and make me giggle.  It’s partly my own fault because I usually wake up in a good mood and I’m so smiley even late at night.  And lately, I’ve been moving all around in my sleep and just after being in bed for just an hour or two I’ve managed to wrap my blanket all around me and I’ve turned 180 degrees, and they seem to think this is extra funny. I’m telling you, they’re really bad people.

On a slightly different topic, I’m doing a great job with learning how to sit up.  I’m strong enough now to actually sit up in a high chair all by myself!  The mom’s tried when we were out at a resturant one night and I was so happy.  Then, this week when we went to Gramma and Pa’s for Mama C’s birthday, I sat in the high chair at their place for so long.  I’m also getting really great at talking up a storm.  I don’t like to talk so much when people are talking to me, but if you leave me alone then I just start chatting and chatting and then I get louder and louder until I’ve figured out how to yell.  I’m especially good at yelling in the morning…I’ve decided that if I’m awake, I think the mom’s should be too.

Kind of a Big Deal

For the last few days there has been a flurry of excitement going on at our house.  I didn’t quite understand what was going on: we were shopping a lot, the mom’s were cleaning a lot, and then yesterday Mommy was going to town making all of these donuts.  Then today, I had to get up a little early, have a bath and put on a (really pretty) new dress.  Mama C took extra time to do my pigtails just right and even though I wasn’t feeling great, I let her do it.  Mommy was no where to be seen but then Grandpa appeared and we got to go for a drive in his car (not the lexus though, so I’m still a little disapointed!).  We got to this little community centre and Mama C and I found Mommy, with Grandma and Telly and Theresa all working hard in the kitchen.  Then I turned around and saw Gramma and my great Aunts Martina and Bev and my cousin’s Connie and Alex! I really didn’t understand what was going on.

Before I knew it, the whole room was filled with all of the people that I love the most! Auntie CC, Thor & Uncle Rico, Uncle Jeff and Auntie Marina, Natalie, Joey and Jason, Jacquie (who I hadn’t seen in so long and missed!).  It was just crazy! Everywhere I looked there was someone that I really wanted to go and see and get caught up with.  But the problem was, I was also feeling a little bit sick (my nose has been a bit stuffy and today I started coughing and I think I had a bit of a fever). And when I get sick I do get a little bit cranky, so even though I really wanted to make my way around the room and say hello to everyone, I was also very happy when just one person would hold me and I got to fall asleep.

But after I woke up (and had a bit of a bottle), the mom’s stood with me beside this beautiful blue and white cake and everyone gathered around, camera’s in hand, and started to sing.  For a minute I really didn’t get it (even though I liked the singing very much) but then I realized that they were singing Happy Birthday….to me!!! This was my birthday party! I was so sick and unhappy that I didn’t even notice, until everyone sang and then I got to eat a cupcake! Well, I got to eat the icing off of the cupcake, but everyone knows that’s the best part anyway.

I just couldn’t stop myself from going back for more and more icing.  Apparently it was okay though, because everyone laughed and thought I was pretty cute (they’re learning these people!).   And I really was happy because everyone seemed to have a good time and once I was able to take it all in, I realized just how lucky of a girl I am that all of these people love me so much that they wanted to come and be a part of my very first birthday!  And don’t even get me started on all of the wonderful, kind and thoughtful gifts that people brought.  I might just be the luckiest girl in the world!