21 Magazine and Skeptics Be Damned!

A mom post today…

Late last year, during Down Syndrome Awareness week, I saw a picture that the CDSS (Canadian Down Syndrome Society) had posted to twitter of a bunch of their staff sporting these awesome CDSS temporary tattoo’s.

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I sent a reply quickly, not thinking anything would come of it, asking where I could find one. To my delight, I got a tweet back from their design and communication coordinator, Kaitlyn Pescon, saying that while they weren’t actually giving them away, she would make arrangements to send me a few. From there, a lovely twitter friendship was born and Kaitlyn started reading all about Lily’s Big Adventures.

Fast forward a few months and I received a very unexpected email from Kaitlyn: the CDSS was putting together their Spring edition of their quarterly magazine, 21, and she wanted to know if I would be interested in writing an article for them. I was overjoyed, not only because it meant that I got to write for real, but because (as I’m sure is obvious), I love being able to share with people how amazing our lives have been since Lily joined our family. They gave me no real direction on what to write, just a word maximum – which was the hardest part to stick to! It took me several attempts to get the right feel for what I wanted to say: that facing life with a child with special needs can sometimes feel incredibly daunting and outright scary, but that when you become a parent the rest just falls into place. As parents, regardless of our child’s abilities, we worry that we’re not doing enough for them. We bask in their accomplishments and are constantly amazed at how fast they learn and change and grow, but we don’t allow ourselves to feel the pride in our own abilities – to nourish them and to cherish them and to make them feel secure and safe enough to develop.

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And so, now that the CDSS Annual Conference is wrapped up for this year, I can put this article out there for the rest of you to see. It’s not a masterpiece, it’s not going to win any awards and you’re not going to wake up and find me on the talk-show circuit, but it’s just my own little piece of our world, out there for anyone to see…

Adventures in Adopting; Adventures with Lily

And very quickly, on a happy Lily note – we had our latest check-up with our Neurologist this week and she is incredibly happy with how Lily is progressing: it’s been just over a year without any signs of additional seizure activity! She, as always, reminded us that between being born early, having Down Syndrome and her brain injury that she is at a much higher risk for developing additional types of seizures, and so the plan is to keep her on her medications for 4 more years (as opposed to 2 years in a typical child), and then re-assess at that time. Seeing neurology, of all the clinics, always seems to be so incredibly rewarding. It was neurology, after her cardiac arrest, who told us that she was blind and that she wasn’t going to see again. It was her brain injury that kept her in that hospital bed, not moving her left side and keeping her personality hidden from us. But here we are, almost 2 years later and she’s thriving. She can see across the room and scoot her bum over to pull her toy off of the couch; she watches the cat stalk across the room and tries to grab her tail at every chance; she’s figuring out how to make her hands and her feet work together to keep standing in her playpen and she’s babbling up a storm. So, take that Neurology – don’t doubt her abilities!

 

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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

 

 

 

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.

 

Much Needed Sunshine

While my tiny giggle hasn’t turned into full out squeals of laughter yet, I have decided that it was time the real me, the smiley, happy, always content, can’t stop squirming me, made a grand reappearance.  After December being a bit of a wash out with colds and probably some funny brain stuff, and January being awful because of my new medicine, I realized that it had been too long since the mom’s (and everyone else) had seen what I can do.  This week I’m turning it on strong.

I’m determined to sit up.  I like the whole world a lot more when I’m sitting up – I can see things better, and kick my legs better and grab my feet easier.  But my arms still aren’t quite strong enough to help me get there.  But I’m determined.  Lately, I’ve been experimenting with trying to use every single muscle in my core to spring up into a sitting position.  Apparently it’s pretty funny because it makes the mom’s laugh and laugh and laugh.  If I’m being honest it probably does look pretty ridiculous, so I should probably just keep working on making my arms strong enough to help me, but trust me, if I can figure out a way to do this without my arms, I totally will.

I’ve also been so very happy – I just can’t stop smiling.  I love to hear the sound of my own name, and I love to see people’s faces smiling back at me.  And I really really love the sound of the mom’s laughing – it just cracks me up.  Tonight, it was our weekly dinner date night with Gramma and Pa and that was super fun too.  They hadn’t seen me so happy and lively since Thanksgiving, so I think it made them pretty happy to see how active and bouncy I am.

But the best part of the night was when Pa got to hold me for a really long time (he’s really comfy, it’s like he’s been holding kids for a lot of years!).  We got all settled in nicely and then he started to sing for me.  Mama C always told me that there were two things about Pa I needed to know: he sings really well (when he’s not just fooling around) and he gives the best hugs in the world.  I learned about the hugs a long time ago, and I’m glad to know now that she wasn’t lying about the singing either.

Silly brain

I’ve had a very eventful time lately.  The mom’s asked me not to talk about it until now because we didn’t really know for sure what was going on, but now that we have a better idea I can tell you all about it.

A few weeks ago, the mom’s started noticing that I was having these little muscle spasms.  It would mostly happen just after I had woken up and was just playing on my mat.  They were always very quick (only about a second or two) and it seemed to happen when I was grabbing my feet, so at first the mom’s thought it was just me losing balance a little bit.  But over time (and especially when my sleeping got all messed up over the Christmas break) it started happening a little more often.  Sometimes it would just be one or two spasms, but other times it would be 7 or 8 in a row and they would get a little bigger.  The mom’s made a big effort to get my sleeping routine back in order and the spasms seemed to go away a little bit but they were definitely still happening.

Finally, last week my lovely pediatrician was able to get us in for a visit to Sick Kids for an EEG.  It was on Thursday morning and I had to wake up at 5am and then stay awake until the test at 8:30am because I had to be tired.   An EEG is a test where a nice technician measured my head, drew all over it with crayons and then put all these little stickers on my scalp that were attached to pretty coloured wires.  The wires were able to send pictures of my brain activity to the technicians computer.  The test lasted about 1 hour and I had to be sleeping, and then slightly awake, then awake enough to look at flashing lights and then asleep again.  Luckily Mama C was holding me the entire time so I was pretty comfortable and only cried at the end when she and the technician were pulling all of the stickers out of my hair.  After that we waited around until we finally got to see the neurologist who was able to explain to the mom’s what’s been going on.

It turns out that I’m having something called Infantile Spasms (or West syndrome), which are a type of epilepsy/seizure disorder.  Kids with Down Syndrome are more likely to have these issues then typical kids, but also kids who have had an Hypoxic-Ischemic brain injury are also more likely to have these as well, so it shouldn’t really be a huge surprise that I’m having issues with them, but it was.  The difference between Infantile Spasms and other seizures though is that my brain activity between the physical seizures is all still all wonky (as opposed to only being wonky when I’m actual having the spasms), which means that it can cause problems with my development. (The mom’s found a really good article to help explain it to them, so if you want to understand it better you can read it too: http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/BrainandNervousSystemDisorders/Pages/Infantile-Spasms.aspx

All of this means that the doctors have to treat it very quickly and very aggresively so that we can stop the spasms and the wonky brain activity before it causes too much damage.  Luckily I have Down Syndrome though, and even though it’s more likely that we will get West syndrome, it’s all less likely that it will affect us as badly as typical kids so it’s actually really good that I have this extra chromosome (now it’s not just my cute chromosome but it’s my protective one too).   They’ve started by putting me on a new drug called Vigabatrin and they’ll check in two weeks to see if it’s working.  If it’s not then I’ll have to start a different drug that’s given to me everyday with a needle, so I’m really hoping the Vigabatrin works.  It comes with a lot of not so nice side effects though, so until my body gets used to it, I may be having a couple of not so great weeks.  It’s supposed to make me very drowsy and tired, but will also keep me awake at night.  It may cause me to gain weight (which actually made the mom’s happy) but may also make it harder for me to poop.  The big thing that made the mom’s unhappy was that it will probably cause me to loose the muscle tone that I’ve worked so hard to build up.  So, things that I’ve been working so hard on, rolling over, sitting up may get a lot harder in the next little while.  It also means that I’ll have to just be g-tube fed for a while too because I’m going to lose the muscle tone that helps me suck and I’ll also be very drowsy, so it would be dangerous for me to try and eat because I’m so good at aspirating when I’m not at my best.

So, it was a big week and we don’t really know what it means for the future.  I’ll have to be on the medicine (whichever ones works) for at least 7 – 8 months and hopefully by that time I will have grown out of these seizures.  But the doctor’s did say that it’s probably pretty likely that I’ll have a different kind later on.  So, like my veins and my sight, we’ll just add this to the list of things that I’ll just have to figure out as we go along.

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.