Quick Fast

There are so many big and wonderful things that have happened in the past few days but I only have a quick fast minute to tell you all about them!


First of all, according to Health Canada, my name is Lily! It will take another 6-8 months before my adoption becomes finalized before the judge, but this is a first big step!  At least it means that all of my doctors and nurses will call me by the right name!

Secondly, we went to my first cardiology appointment since I was allowed to leave the hospital and everyone was super happy with how well I seem to be doing! I’ve gained more weight (14 pounds!) and gotten even taller. My oxygen levels are holding steady at 99-100% which is extra impressive with only 1 functioning lung!  It means that my right lung is kicking butt and taking names (and doing the work of 2 lungs really really well!)   They don’t want to see me again for another 2 months but at that appointment they will do an ECHO and an ECG and take a look at my veins more closely and decide what to do then. If they’re narrow again, then I’ll be booked for another heart catheter, but if             they’re the same then they’ll keep doing scans every 3 months (any shorter than that and the results all start to look the same). I even got treated like a bit of a celebrity because 1 of the doctors who was looking at me had just done a big presentation to some other doctors about PVS and he used my pictures! He was happy to meet me in person and even happier to see how great I looked (I think I surprised him a little bit!).

We also talked about the winter and it being something that the mom’s called “cold and flu” season and the doctor’s gave them some good tips called “common sense” to use for the next few months to make sure that I stay healthy and that my 1 lung doesn’t have to work any extra: make sure everyone who touches me washes their hands, the mom’s have to get a flu shot, don’t let any kids kiss or touch my face because they just might not have symptoms of being sick yet and just be smart about where I’m going and who I’m hanging around. It’s a lot of stuff, but at least it doesn’t mean any extra medicine!

I Can See Clearly Now

It was a busy busy week in our little household.  After a very lazy weekend the mom’s decided that we needed one more adventure before Mama C went back to that work place, so me and the mom’s and Auntie CC and my Thor all piled into our car and we went to a new place called the zoo.

I LOVE the zoo! Well, mostly I loved the Zoo-mobile because I got to sit up and watch all of the animals go by (who knew there were so many animals?! I thought there was only my dog Ellie and the cat) and the wind was blowing in my face and there’s nothing I like more than that.  I like to turn my face towards the wind so that I can feel it.  Auntie CC had never seen me do it before and she laughed and laughed.  But do you know who else loves the Zoo? My Mama C and Thor! Mama C had this thing attached to her face the whole time (Mommy says it’s a camera and now that I’m out of the hospital, I should just think of it as part of Mama C’s face) and she just kept taking pictures of Thor being all excited to run around and check out all of the animals.  Apparently she took lots of me and Mommy too, but I didn’t even notice because she likes things to be “candid”.  That lady is pretty silly.

On Tuesday, Mama C had to go back to work, so that left Mommy and I alone during the days.  Luckily we had lots to fill up our time so we didn’t miss Mama C too much.  We went to the pediatrician (I have a bit of a cold), and to Mommy’s old job.  We visited Mama C at work (because she always forgets her keys – Mommy thinks that it’s a ploy just to get some mid-day snuggle time) and did grocery shopping and returned our cable box (the mom’s decided that they weren’t watching a lot of TV, so they got rid of cable – I think it’s a big step for them!).   We had some home appointments, with a new lady named Cathy, who is called my case coordinator (she makes sure my dietician, occupational therapist and nurse all come at the right times and she can order me new services later on – like a speech therapist when I decide I want to start talking).  After talking to Mommy, Cathy couldn’t believe everything that had happened to me over the past few months and so she was very helpful in getting some extra services to help me get better faster.    I also got to see Kristen, my home OT, who was super crazy impressed with how much I’ve improved in the 2 weeks since I last saw her: I can rollover from my back to my side and hold my head up for ages and ages (even though it’s heavy!) and I started playing with my feet! This means that in just a short time, I’ve gone from being 1 month old (developmentally – I’m not really that little) to more than 3 months! I still have a lot of catching up to do, but everyone is really happy with how quickly I’m learning things.

Even more exciting is that I’m starting to see things again!! The mom’s were pretty sad that my brain injury seemed to cause a lot of problems with my vision and for a while they’re weren’t seeing it improve very much.  But then one day, early last week, Mama C put a Wiggles video on her phone, just to listen to the music and when she moved her phone, I totally looked at it and tracked it as she moved it from side to side! Then she turned the music off (just in case I was just moving my eyes to where the sound was coming from) and I did it again! It was a bit dark when she tried it that day, so she waited until the next day when it was bright and sunny in the living room and tried one more time and I still followed it with my eyes!  It’s still not perfect and most of the time I need to see it (whatever “it” is – it can be a toy or a light) from my peripheral (my side) first before I can track it (as opposed to just holding it up in front of me and letting me see it) and one of my eyes (it switches sometimes) turns in a little bit, but it’s still super super exciting and it’s giving everyone a lot of hope that all of my sight will come back soon!

Looking Up

After the CNE last week, the mom’s and I had a very lazy weekend.  There were a lot of afternoon naps and snuggling on the couch while the mom’s watched some bad TV (I’m only a baby and even I know that 30 year old women should probably not be watching Degrassi Goes Hollywood, right Uncle Jeff?)  I had some fun time with Grandma and Grandpa Elliott and Uncle Jeff and Auntie Marina on Monday, which was excellent because then Uncle Jeff and Auntie Marina stayed ALL day and we just got to keep hanging out. Today was a big day in my life.  It’s not everyday you know, that a girl turns 9 months! That’s almost one whole year! And to show how awesome I am at 9 months, I decided to start LOVING being on my tummy (especially if I’m lying on Mama C) and remembering how to push my head up again.  Today I did it for so long while lying on Mama C that my muscles actually got all shaky afterwards and I couldn’t hold it up anymore.  Mama C says that I’m especially cute when I lift my head up, smile really big and then snuggle right back down.  She thinks that I did this just to make her feel bad about having to go back to work so soon.

We had a very busy day on my 9 month birthday.  We started by going to see Mama C teaching swimming lessons to my Thor and Darshan.  I can’t swim yet (I don’t even technically know what swimming is) but I know that those 2 boys are really good and they make Mama C laugh a whole lot.  When the swimming was done, the mom’s stood around chatting with Auntie CC and Darshan’s mom Jenna, while I rolled around on my purple Grandma quilt.  Finally everyone decided to leave and the mom’s put me back in my stroller so that we could walk down to Sick Kids.

Don’t worry people – we were only going for a quick visit to say hello to my friends on 4D (the cardiology floor).  When I had my chylothorax, the mom’s had to get special formula and they found out that it was pretty expensive.  But because I went back into the hospital so quickly, I ended up using almost none of the 11 cans that we had so the mom’s decided that they could give back a little bit by giving it to the dietician’s on 4D (since Chylothorax is pretty common with heart surgeries) in case there’s another family who needs it and might have trouble paying for it without being all stressed out.  The mom’s understand that it’s really hard sometimes to leave the hospital without feeling scared and overwhelmed already, and no one should have to worry about money for the right food too.   So, we stopped by the nurses station and I got to see a bunch of my old nurses, who were really happy to see me dressed in real clothes and much much happier then when I was hanging out with them all of the time.  Some of them even said that I looked bigger and we found out this afternoon that they were right! Once we were done at Sick Kids, it was time to go and see my regular old pediatrician.  She was very happy to see me because in just 2 weeks I gained a whole pound and I grew another centimeter – so now I’m 12.5 pounds and 64cm long! I’m totally a little string bean.  The doctor was also happy because I’m still doing really well drinking from a bottle and my reflux seems to have gotten much better (the mom’s say to knock on wood).  It’s actually so much better that I’m able to stop taking so much of one of my medicines and she hopes that next time we’ll be able to start slowing down my other one too.    Obviously this means that getting the g-tube was the absolute right decision for me!

We finally got to come home after all of that and I had a small nap.  My daytime napping isn’t going super well, but since I don’t get really cranky and I sleep really really well at night, the mom’s are just letting this ride out for a bit – plus, they’re still just liking the fact that we’re all at home together so I’m getting a bit spoiled.  They say that has to stop soon but I think I can pull it off for a little bit longer.   I am pretty cute you know.

Living It Up

I thought that Mama C was joking a little bit when she kept saying that we were going to cram an entire summer of fun into the two weeks before she goes back to that work place, but she wasn’t.  That Mama knows about scheduling (they should give her a scheduling project at work….oh wait….).  We have just been so so busy this week and I really like it.

On Monday, our friends the Randall’s got back from JAC camp and because the mom’s missed them so much (and me too, but that goes without saying) we all went out to dinner and then went back to their house where Madison and Michael held me lots and then Cathy rocked me to sleep.  I was sad when the mom’s woke me up to take me home.  Cathy is pretty comfy.  We also got to see Papa that night (that’s Cathy’s dad) and he is really funny.  He really likes to tease Mommy but secretly I think he really likes her.

On Tuesday, we finally got to go back to Mama C’s swimming lessons with Thor and Darshan.   Mama C has a really good time swimming with them, mostly because she thinks that they’re both “so so cute.”  I also got my g-tube stitches out on Tuesday, which means that I can go swimming now too so I think Mama C will take me with her sometimes so that I can learn to love the water too.  She keeps saying that swimming is in my blood, and I don’t have the heart to remind her that this is not entirely accurate.  The mom’s also keep looking at something called the FUN Guide and they’ve started planning activities for the fall – Mommy is excited for a place called Riverdale Farm and EYCC, so I think we’ll be there quite a bit.

Today, my new home OT, Kristin, came for her first visit.  Mommy seemed to think that I liked playing with Kristin almost as much as Lisa and we got a whole bunch of exercises that I should do to make my neck stronger and hopefully my eyes a little better too.  I heard Mommy and Kristin talking about “a lot of tummy time” so I’m very cautious to see what happens with that in the next few days, but if they try too much I’ll make sure that everyone hears just how loud my screaming can be!  Once Kristin was gone, Cathy, Madison and Michael showed up at our house with Mama C in tow (she had been shopping with Madison) and we all got ready to go to this place called the EX.  Everyone was really excited but I didn’t understand the hype – I mean all of the lights were really cool and everyone laughed about all the gross food they were eating, but I totally didn’t get to ride any of the rides, so i think I got ripped off.  I told Mama C that next year I’m going on at least the carousel!

Tomorrow, we have a super fun day planned with my Theresa, Jason and Joey.  We’re going to meet a place called High Park close to Gramma and Pa’s house.  Mama C said that there is a zoo and geese to feed and a big park to play in (that’s for Joey mostly) and a wading pool and a train ride!! It sounds like my idea of fun.  All the grown-up’s are bringing food so we’re going to have a picnic lunch and just enjoy being outside .  I don’t know what’s on the plan for next week, but if Mama C has anything to do with it, we’ll be busy!