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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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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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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The Lily Pond

I’m guilty.  It’s totally my fault.  The mom’s have been bugging me to write a new post for ages and ages, but they wouldn’t accept my excuse of not knowing how to type!

So, here I am, back again to fill you in on all of the going-on’s in my very busy life.  I promise that from now on, these posts will happen in a far more timely manner – it’s too hard trying to remember everything that’s happened if I let it go too long.

We had little out of town adventure with all of the mom’s favourite ladies for one weekend. We drove so so so far and went to a place called Bancroft – we barely even had cell phone reception, which was a big big step for the mom’s.  Most of the weekend was rainy, but there was a big big big fireplace and lots of boardgames and lazing around.  And the best part was that there were so many doggies there too! Rachel brought my Charlie, who I hadn’t seen since Florida, but then our friend Toby also brought her dogs! And two of them are even famous! Ginger and Buddha were in the movie Snow Buddies! They played Buddha (obviously) and Rosebud! Buddha was fun and has a tail that likes to wag all over the place, but Ginger was my very favourite.  She likes to snuggle up close and was so gentle and sweet and let me pet her for hours on end.  She could be my new best friend.

This fall has been very adventure filled for our little family.  I eventually learned what “escrow” meant. At first I was very excited because a new house sounded very cool but then I learned that what it really means is a LOT of work, especially when you’re trying to move in just 3 weeks! Mommy worked very very hard for those 3 weeks trying to get everything organized for us so that we didn’t go totally crazy.  In the last week, I got to spend some time with Mrs. Auty (that’s my Steve’s mom – she keeps telling me to call her Fran, but for some reason I just can’t do it.  It must be genetic), and then Gramma came and spent 3 whole days with me so that Mommy could actually be at the new house and not worry about me getting into trouble. It also meant that the mom’s dragged me all over the place – Home Depot for paint, Ikea for a whole bunch of new furniture!  On our actual moving day we had a whole lot of help – not that I got to see most of them because I got to spend the day with MeMa.

Then, ass soon as we got moved in, ALL three of us got sick! Mommy had it first and then she gave it to Mama C, who then got even sicker and had to take medicine – she even had to wear a mask when she and I were hanging out.  And we were hanging out a lot – especially at night.  You see, I was sick too (mean mom’s!) and it was really hard for me to breathe in my bed, so I decided that it was just better to stay up as much as possible.  I mean, I wanted to sleep but when I did, when I woke up I just felt so gross that I would just cry and scream and I didn’t want anything except to be held.  I heard Mommy tell the doctors that she thinks I only really slept about 4 hours in a 48 period.  I don’t know if that’s really true, but I decided to throw the mom’s a bone last night and I slept through the night.  Now, if only Mama C would stop coughing and waking me up!

With all the busy-ness and the sickness, I’m especially sad that I haven’t had a chance to go and check out my new pool.  Yup, you heard me, my new pool.  Mama C works with swimming pools, which is a pretty cool gig, but even there people seem to love me more than they love her.  These guys decided that Regent Park needed a brand new pool because it’s getting to be such a cool neighbourhood and part of the amazing new Regent Park Aquatic Centre is a tot pool with all of these really cool features – bubbles and spray features, and it’s always warm and shallow enough for little kids to play.  And one of Mama’s C’s bosses decided that this new tot pool would be named after me! I’m not even kidding…I even have a sign! I’m super sad that I haven’t had a chance to go swimming there yet, but it’s my pool – I totally have time!

Sadly, being sick also meant that we had to cancel a bunch of physiotherapy appointments too.  Which is a little sad because this fall I’ve started doing some really crazy amazing things! I decided that I was getting tired of just sitting around, so I’ve been working on scooting all around the house on my bum (which works a lot better on the floor at the new house), reaching for anything and everything that I can get my eyes and hands on, especially people’s faces, and the hardest thing has been learning how to stand up! I still can’t quite do it all by myself, but my legs are so so so much stronger than they ever have been and I’ve even started taking some steps with some help from either the mom’s or Kristin or Anne Marie.  I still have some work but trust me people – I think I’ve decided that 2013 is going to be the year I start to walk!

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.

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.

Rubber Ball Life

If I have learned one thing in my short but dramatic life, it’s that life really does work like a rubber ball – it bounces up and down between happy things and sad things before you can even realize what’s going on.  I know the mom’s are wishing lately that there would either be a few more happy things or even just that the sad things would be spaced out a little more so they could at least take a breath in between bounces.

I had a new dog.  His name was Otis and he was tiny like me, and funny like me and almost as adorable as me.  Mama C was really sad about Ellie not being around anymore so Mommy decided to surprise her and found a new puppy for us.  Otis came home to us on the Friday night after Ellie went away and we had a really good weekend.  But then by Monday he was really sick and the veterinarian told the mom’s that he had something called Parvo, which is very contagious in puppies and means that they can’t live anymore.  So, the mom’s had to put him down like Ellie, because by the end he was too sick to even move.  The mom’s were surprised at how fast it happened and felt really bad that they weren’t able to do anything else, but knew that it was for the best.  Either way, I miss my friend Otis.  I actually really liked him – he was very gentle with me (after the first day when he used my foot as a chew toy) and he just scampered around the house making everyone laugh.  Poor Otis.

So, that was the sad thing.  The problem was it was just one more sad thing on top of a whole lot of other sad things in a short period.  Between Grandma dying, me having seizures, Ellie dying and then Otis dying, it has been a hard 6 weeks for the mom’s.  Mama C decided that it was time for a little reality break so she’s off on vacation for the next two whole weeks! We’re just waiting for my new cousin, Baby Ollie to be born and then we’ll go to Grandpa’s house in Frankford and spend some downtime just hanging out in his nice house by the water.

But there have been good things happening too! The smiley happy me that made an appearance two weeks ago seems to be sticking around.  All day long I’m just happy to just sit, bounce my feet all around and smile these big huge smiles.  I’m giggling more and now I can’t stop talking.  A lot of the times I’m just playing with different noises but the mom’s have caught me babbling a little bit too.  Everyone who comes over: Janet (my vision worker), my OT Kristin and Kathy and Barb from Surrey Place (Infant Development and Speech and Language) say that it’s like being around an entirely new kid.  They’re amazed at how much I’ve changed in just a few short weeks and they’re so happy that I’m learning new things all of the time.  And I LOVE seeing people.  I’m not even shy a little bit.  This weekend my cousin Alex and her boyfriend Aaron came to visit and I was so happy to just play and smile with them, but it doesn’t seem to matter who’s looking at me, I just want to show them how happy I am.  I don’t really care about toys or stuff, but I love the people in my life so very much.

And it seems to all be because the new medication the doctor’s put me on for my seizures seems to be working so very very well.  I haven’t had a single seizure in almost 3 weeks and my brain is definitly not feeling as fuzzy as it was before.  You can tell just by looking at me that I’m feeling so much better.  The doctor’s were really happy at how well I responded to the medication and were happy that I didn’t have to go onto the other one.  They were even able to give the mom’s a baseline for my development, which made them happy because a) it’s been a long time since anyone has been able to do that and b) they weren’t too far off the mark themselves.  The neurologist says that I’ve developed to about a 4 – 6 month old baby, which at first seems not so good (seeing as I’m 14 months), but is actually pretty amazing, seeing as my brain was pretty much re-set in July.  It’s almost like I have 2 birthday’s to count from.  I have my December birthday which is my actual age, but then I have my brain birthday which is July and would make me 7 months old.  So the mom’s are really really happy with how far I’ve come since I was that little baby in the PICU that wasn’t moving at all, couldn’t see light and couldn’t breathe on her own.  When you put it that way, I’m pretty amazed myself.