A Great December

Guys, it’s a good thing that it’s almost the new year, because I totally need to make a resolution that I’m going to update you all a lot more often.  Lately I’ve just been so busy that by the time I can sit down and write a post so many things have happened and I’m scared I’m going to forget something.

jessandlily

First – it was my birthday and now I’m 2! That meant it was totally time to party.  The mom’s planned a fun afternoon for me and my friends – there was a slide and a ball pit, cars to drive, lots of food and then cake! Can I tell you that I’m seriously digging cake.  My Theresa made the most delicious cake ever (because that’s what she does) and it was so good that I actually tried to eat the plate!

lilycake

I got to see so many cool people – my birthday twin and my BFF (Daniele & Shanelle) came, even though they’re so much older and they brought their friends Sarah and Cameron, who were so much fun, and they even let Rachel and Tammy come along too.  I got to spend a lot of time with my friend Caleigh too, who is the same age as me but knows how to run and walk.  Even still, she slows down so that we can play together – she’s awesome! Mostly, it was just the best birthday ever! I can’t wait until next year.

caleighandlily

It was more than just my birthday party that was super cool, it was also my birthday present from the mom’s…they bought me a puppy! It’s a boy puppy and he’s black and fluffy and the mom’s say he’s going to be really big (which is better for me because then he’s kind of like a pony!).  There was some debate about his name because Mama C was telling Mommy not to be ridiculous, but I think that in the end Mommy won because we’re all calling him Sprinkles now.  Mama C looks a little embarrassed when she has to call him when we’re out for walks but Mommy just laughs and laughs so I think it’s okay.  Sprinkles and I haven’t spent too much time together yet, because he’s a little bouncy and bite-y still (the mom’s say that’s because he’s teething like I am), but sometimes he just sits nicely and lets me pet him (and by pet him I actually mean pull on his fur or try and stick my fingers up his nose).  The cat doesn’t really like him, but she’s outnumbered so too bad for her!

sprinkles

I had my latest check-up with my cardiologist at Sick Kids last week.  I had to be sedated so that they could do an ECHO and look and see how my heart is doing.  The mom’s were super happy because even while I was on the medication that makes me sleepy, my oxygen sats stayed as high as 96%, which is pretty incredible.  And it turns out that it’s because I am incredible! Dr. Dipchand says that my hearts looks amazing! She confirmed that there is no blood flow at all coming from my left lung, but I’m handling it really well and there are no signs that my pulmonary pressures are high.  All of this means that I don’t have to go back and see Dr. Dipchand for ONE WHOLE YEAR! She and the mom’s talked some more about some down the road, long term stuff, but for now, unless I start showing signs that something is going funny, then she said there is no point in coming in to take another picture to show us the same thing.   It may have been the best birthday/christmas gift ever!!

crystalandlily

Speaking of Christmas – I just wanted to tell you all that I hope you have a very very very merry time with all of your family or friends or friends who are family.  I know that I’m very very lucky to have incredible people in my life who make the holiday’s so happy and amazing and I just hope that you do too! Plus, I met this Santa guy and he seems to know what’s going on….so maybe talk to him too and he’ll sort you out…

lilyandsanta

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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

post cookie glory

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…

tired eyes mean nothing

 

 

 

It’s Been A While

Have you missed me? Mama C has been hogging the spotlight lately to write about her “feelings”, but luckily I’ve been really busy so I forgive her and I’m ready to take back the reins.  I hope she’s not too sad about it.

I really have been super busy.  It’s just amazing how time flies when you’re learning so many new things.  In March, the mom’s noticed that I had really stepped up my game in all of the things I was learning – I was reaching for toys that you put in front of me, I started enjoying being on my tummy and I started to rock at rolling over.  So now the mom’s are making me do something called physiotherapy.  I had been doing it with my OT Kristin, but because I’m also eating really well (like really really well people – I can gum a cheese puff like nobody’s business and don’t even get me started on how quickly I can swallow strained carrots), Kristin wants to be able to spend our OT time on eating, so now we do physiotherapy with another person.  Sometimes I really like it – I get to play with different toys and we sing come songs while I rock back and forth, but other times it’s a lot of work and I’m not shy about letting everyone know that I’m totally into it.  But we think that it’s working because I’ve been caught sitting on my own for longer and longer and the other day I even got to hang out on my hands and knees.  The mom’s say that this is getting me prepped to start crawling.  I’m not exactly sure what that is yet, but they say that I’m going to like it.  I think it has to do with moving around the room and if I’m right about that I’m really excited! I LOVE to move.  I don’t think I like anything better than starting in one spot and then finding myself on the opposite side of the room just by rolling and rolling.  I’ve gotten stuck with my legs under the couch or the television stand but mostly I get completely stuck under the coffee table – those legs make it hard for me to keep going! Even when people are holding me, unless I’m in serious cuddle mode, I’ll squirm around until they get the hint (although sometimes I’m just tricking them and squirming around so that they’ll turn me around and I can stick my fingers in their mouth).  Now that I’ve figured this out, there’s no stopping me.

Did you know that it’s almost been one whole year since I came to live with the mom’s? I can’t either.  Sometimes it feels like yesterday but then I look at pictures and see just how tiny I was then – my hair was so short! On Sunday (May 27th) is the 1 year anniversary of when I came home to stay.  It’s pretty exciting.  And even more so now because the mom’s are just about to meet with my adoption worker and sign the papers that say that they really really want me as their daughter.  Those papers will go to the CAS director and then onto the court.  Once the court has it they will set a date for me and the mom’s to come in and they’ll make my adoption legal! It’s still about 3 months away, but the papers being signed is the very last step and so really it’s just around the corner.  Don’t worry – I’ll tell you lots more about it when the time gets closer.

I know some of you have been wondering how I’m doing with all of my doctor’s visits, but the truth is, I’ve barely had any lately!  I saw the ophthalmologist last week, who was really happy with how my eyes are doing.  She just kept saying that I’ve surpassed any expectation they had of how well I would see – in fact, she thought that I would never see again, but I reminded her that my brain is a pretty amazing thing.  We’re still noticing that I have some nystagmus, and that my eyes turn in a bit when I’m trying to focus on something, but the ophthalmologist also said that a lot of new babies have those issues when they’re learning to see and a lot of the time they correct themselves.  She’s going to see me again in 6 months and she’ll decide then if she wants to do anything about it.  I also have to go and see my cardiologist next week, but I’m not really sure why.  I think the mom’s and I agree that I’m doing really well.  I have lots of energy, I don’t get tired when I’m eating and my colour has stayed fantastic.  I have to have a chest x-ray though and I really hate those.  That’s when they stick me in the little tube so that I stay perfectly still while they take the picture.  I’ll also have an EKG done to check how my heart is doing, but we’re secretly hoping that I’ll even get to come off the diuretic medication.  But going to cardiology means that I also get a chance to go and visit my friends on 4D and show them how big I’ve gotten since they saw me in December.  I think they’re going to be pretty impressed.

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.

Merrily We Roll Along

The mom’s and I are doing really well these days at just rolling with the punches.  When we were first getting used to all my little quirks, it was easy for the mom’s to become overwhelmed when I hit a little bump in the road, but lately I’ve noticed that they seem to be better at watching how things unfold before they start to get really worried.

For instance, last week the mom’s noticed that I started having small seizures again.  They were the same kind as last time, little muscle contractions that I can’t seem to control.  There weren’t many, but since the mom’s have seizure eagle-eyes now they were able to spot them pretty quickly.   They got an appointment with our pediatrician who managed to get in touch with my neurologist and they worked out a plan to change the dose of my seizure medication because I’ve grown.  The doctor’s also let the mom’s know that if my body is fighting any kind of virus, even if I’m not showing any symptoms yet,  my seizures become harder to control, so we need to go back to being very very careful about being around other kids and adults who may be sick.  The mom’s took all of this with stride and have just spent the weekend keeping a pretty close eye on me.  I don’t think that I’ve had any more seizures, but we’re going to see the neurologist again, just in case.  Either way, I’m pretty proud of the mom’s – they’re really growing.

Otherwise, I’ve had a really great week! Last weekend, I got to meet 2 new cousins (well, Mama C says they’re not new, they’re just new to me!), Melissa and Brittany.  They came all the way from BC just to see me!! (Mama C says that they actually came to visit my Aunt Bev, but I obviously know better).  We had a nice afternoon at Gramma and Pa’s house, with the two of them and Aunt Bev.  Auntie CC, Uncle Rico, Thor and Baby Ollie were there too and we had so much fun together! I thought that maybe I would be a little jealous that there is this new baby to take over my spotlight, but it turns out that being the only girl does have some advantages.  Luckily Baby Ollie is super duper cute, so I don’t mind sharing the attention with him at all (and especially because Mama C like to cuddle with him a lot).

Then, the next day, Mommy and I decided to have a group date with my other two friends Thano and Jack and we went to the Zoo.  We let their mom’s, Rita and Irene, come along too but mostly because they can drive.  We saw the brand new baby polar bear, but my favourite were the penguins! Mama C was sad that she couldn’t go too, but said that if she goes on strike then we can go to the zoo all of the time.  I don’t know what “going on strike” means, but it’s sounding great to me…I just wish I could figure out why the mom’s don’t look so happy about it.

The most exciting part of my week though was going to Sick Kids to see my OT Lisa! I hadn’t been to visit her since I was in the hospital in August and she was shocked to see how much I had grown and how great I was doing.  To my great surprise we were there because everyone thinks that I’m ready to really start eating! This was the best day! I got to sit in a high chair and Lisa fed me all kinds of great things! Thickened formula, apple sauce, cookies…even cheesies! I got to start drinking from a cup (Mama C was helping me and she looked really nervous!).  Lisa told the mom’s that I can have anything that I want now! She said to try lots of different things so that I get used to different textures and tastes – like ice cream and yogurt and fruit and pasta.  I have to work pretty hard at it because I have no teeth, but so far I really like this eating business.

Lastly, on Friday (and then again on Sunday), I got to see my Jacquie! Now that she’s not my adoption worker we don’t get to see her as often so the mom’s made a special date so that we could all hang out.  We had a great afternoon (even if Mama C hogged me and Jacquie barely got to hold me at all) but when Jacquie left, she forgot her sunglasses.  So then on Sunday we drove to her house and dropped them off.  We even got to say hello to her family who were all very wonderful – mostly because they thought I was so cute, especially the dog Gracie.

Really, when you look at it, there are way more good things happening then not so great ones.  I’ll take that.

Come closer, I have a secret….

I wasn’t always this big you know? I started out pretty tiny – 1.78kg to be exact (that’s 3.9 pounds).  But over the last year, I have grown bigger and stronger with every day and every week and every month.  And now, today is my first birthday and even though there were some sad times and scary times, I think that my life is pretty amazing and I’m happy to be sharing my first birthday with all of you.

 

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!