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.

 

A True Lady

Once upon a time there was a dog and her name was Ellie.  Ellie and I had one big thing in common – we were both adopted by the mom’s because they knew we were the right fit for their family.   Ellie came to live with the mom’s on the very same day that they moved into our home.  They didn’t really plan on getting her, but as the story goes they saw a picture of her and fell in love – kinda like what happened with me.  So they drove to a far away place called Port Hope and met Ellie in person.  They knew that she was going to come home with them when she followed them all around even though they didn’t have any treats.  And when she got home she fit right in like she had always been there.  She staked out a spot under the tree by the front steps to sleep in the shade, she learned that the mom’s loved her best when she would nuzzle in (they called them her hugs) and most of all, she figured out that if you were sitting on her couch and she looked at you in just the right way, she could get anyone to move and let her get up instead.

But tonight, Ellie is gone.  The mom’s explained that over the summer Ellie hurt her leg and even though they tried to make it better and then give her lots of medicine to stop it from hurting, it was just hurting her too much.  She was having a lot of trouble with the stairs (she fell a few times), when she wanted to get up on her couch she couldn’t because it hurt too much to put weight on her leg, and her shoulder was just so big and swollen that they were just being selfish keeping her with us.  So, tonight I stayed with MeMa and the cat, and the mom’s took Ellie to the vet to say goodbye to her.  They’re both very sad, but Mama C is really really sad – she says that Ellie made her and Mommy a family.  I tried to help by smiling lots and lots today, and I even threw in an extra surprise and really giggled for the first time just so that they knew I loved them and that I’m going to miss my dog Ellie too – she was really good at cleaning my face.

Goof Ball Mama

I know that some of you may be really shocked by what I’m about to tell you but I’ve thought long and hard about it and I think you deserve to know. Sometimes Mama C can be a total goof ball.

I’ve known it since the first time we met. Sometimes she makes up silly songs and when we read stories she does all of these silly voices. She makes funny faces and sometimes talks to me like Im as old as she and Mommy (like really old). But last night took the cake. Last night she made me hang out in a laundry basket!

You see, my new cousin Baby O, is going to be here really soon (but not until February 8th, right Auntie CC?). And Mama C is getting all excited to take pictures of my Thor and his new little brother. So, somewhere in this excitement she decided to practice with me (I don’t blame her for that, I’m a really great model). So before I really understand what’s going on she’s putting a pillow and my creamsicle blanket into my laundry hamper and then she just out me in there too…like I’m dirty laundry

It really wasn’t so bad (not that I’ll ever tell her that). I got to sit up nicely and watch the cat and play with my feet. Even my dog Ellie came over to see what I was doing. Mama C kept trying to get my dog Ellie and I in the same picture but we are very tricky and we move too fast. That made her mad because apparently there is nothing cuter than babies and dogs but obviously she doesn’t know that rule doesn’t apply if the baby is in laundry basket that used to hold dirty socks. Like I said, goof ball.

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!

Naptime and Soccer and Bubbles….Oh My!

I had a really really really great day today.  It started early, around 6:45am.  This is the second morning in a row that I`ve chosen to wake the mom`s up with my beautiful voice just cooing into the monitor that they so nicely put above my face (so Mommy can hear me breathing).  I think it`s a great way to wake up but the mom`s are starting to look a little groggy.  I think they were used to the Lily who slept until at least 8am everyday.  Mommy and I spent some quiet time together before we got my dog Ellie ready and we had to take her to the vet.  The mom`s had noticed that Ellie had been limping and so they had cancelled the dog walker and made Ellie rest for 2 weeks, but the limp was only getting worse and Ellie had stopped eating too and dropped weight really quickly (we`re a lot alike, me and Ellie).  So, it was off to the vet for Ellie so that she could be sedated and given an x-ray.

Once we got back from the vet, Mommy and I went into the mom`s bedroom and we ended up crawling back into bed with Mama C and we all settled in for a nice family nap (a far cry from the mom`s who said that I would only sleep in a crib – I fooled them!).  It turns out that Mama C didn`t actually sleep that much but it was still really nice and before we knew it I was a little bit late for lunch and the mom`s had to hurry us out the door so that we could go and have lunch with Roxann.  Roxann works with Mama C and they like to have lunch together and talk about all the stuff that`s going on that Mama C shouldn`t care about right now because all of her attention should be focused directly on me.  But it was pretty fun and I let Roxann hold me without fussing which is more than I had given her before.  I guess I have to get used to the idea of Mama C being with Roxann all day instead of me, but no one said that I had to like it.

We got home from that outing and it was only a short time later that the mom`s got me dressed so that we could go out again! This time we were going to meet up with Auntie CC, Uncle Rico and Thor, plus Gramma and Pa, and Dale and Heather (this was actually my first time meeting Heather, but I know why Mama C likes her so much now.  She`s very nice and has great hair – I`m going to get tips from her one day).  We met at a park and watched my Thor play in his last soccer game of the summer.  He was very nice to me and gave me a kiss everytime that he came over to get some water.  Once his game was over, all the grown-up`s decided to walk to get ice cream.  I was pretty tired at that poing, but Uncle Rico carried me and my gtube back-pack, and by the time we got to the ice cream place I was happy again. 

After ice cream, and after saying goodnight to Gramma, Pa, Heather and Dale.  The rest of us packed up to walk back to our cars when we noticed the fountain at Danforth and Jones was doing something funny….it was spitting out bubbles!! Someone (someone wonderful) had put soap in the fountain and it was filled with huge amounts of bubbles and foam.  The grown-up`s took us over to see it and before I knew what was happening, Thor and Mama C had climbed right in and were splashing all around! And then, with no warning at all, Uncle Rico scooped me up and handed me to Mama C so that I could join in on the action! I was happy for a little bit, but then realized that this was essentially a giant bathtub and I hate baths, so it was time for me to be done.  But Thor and Mama C just kept playing.  Finally, Auntie CC saw how close it was to bedtime and we wrapped up our adventure for the day.  It was pretty fun all around and I think that if this is what life is like outside of Sick Kids, that I really will try and stay out of that place!

Staying Put

I’m home again.  I’m hoping to stay here for quite some time because as much as I love Sick Kids when I have to be there, after 66 days I was ready to be back at my real home with just me, the mom’s and my dog Ellie.

The doctor’s finally decided to let me go last Saturday, when they saw that I was eating really well after my G-tube surgery.  They were really happy with how much and how fast I’m eatting and they even said that the mom’s could keep trying to feed me more during the day so that they could cut out an overnight feed, which means more sleep for everyone (Mama C is especially glad to hear that!).

You would think that after all that time in the hospital, that the mom’s would want to take it easy when we first got home, but we’ve been moving and grooving since Saturday afternoon.  We were barely home for 2 hours, when the mom’s decided that we were going to meet Mommy’s friends Issac and Jodi for lunch in the park.  We spent some time there and then the mom’s took me for a walk on the Danforth – they picked up some dinner and I had a really great nap. On Sunday we had visitors Grandma and Grandpa Elliott, Uncle Jeff and Auntie Marina, and new relatives from a place called New Brunswick, my Great Aunt Maureen and Great Uncle Jon (who was really nice and told me that a bunch of people in Perth-Andover were praying for me too!).  There was also a blackout that day, which was fine until 8pm when Mama C started freaking out a bit because there was no water to warm my formula AND one of my medications has to be in the refrigerator and gets really unstable if it gets warm.  Luckily, very shortly after Mama C started to get all frantic, the lights came on again and we had a very nice night at home together.

On Monday I got to see my Jason and Theresa and I saw them again today too (but this time with Joey, so it was super fun!).  We also went and spent some time with Gramma and Pa this afternoon, which I liked a lot because Pa got to hold me and he’s never really done that before.  Tomorrow I’m going to the Scarborough Town Centre with Mommy and Telly and I have no idea what the mom’s have planned for the rest of the week, but it looks like it will all be fun!

Surprise Surprise!

I`m not really liking the mom`s right now.  I had a really long day today: first I woke up around 5am because in my sleep I managed to pull the tube out of my nose, but not all of the way out so it was really uncomfortable.  Mama C woke up and pulled the rest of it out for me and then we both went back to sleep for a little bit.  But only a little bit, because not even an hour later Mommy woke me up again so that we could get ready to go to Sick Kids for my pre-op visit – but not before we had to put the tube back in.

When we got to Sick Kids, the very first place the mom`s took me was to get some bloodwork done, so even though I already had 2 needles yesterday, the mom`s made me get MORE! I was not a happy camper when the (very nice) technician wrapped the elastic band around my arm and even more so when he stuck me with the needle (don`t they know that I need that blood?).  Next I had to go and get a chest x-ray and that meant sitting in a big tube while they took pictures of me, but I really didn’t like the tube, especially since I was finally just happy from the bloodwork again.  Then we went upstairs to the cardiac wing, where we waited a lot in between seeing the nurse who told us all about staying at the hospital, the doctor who explained exactly how they’re going to fix my heart and then the anesthetist who told the mom’s all about how they will put (and keep) me asleep and what to expect after my surgery because I’m going to have a lot of tubes coming in and out of me).

Finally the mom’s decided that we could go home and I was so tired that I slept almost all of the way in the car and then had a big long nap in my crib – Mommy even had to wake me up for my 4pm meal because I was still sleeping.  I don’t know why I couldn’t sleep through it; Mama C had a long nap too and she got to keep sleeping.

We took a quick walk with my dog Ellie, down to the baseball park so that we could watch Telly and Ally play softball, but I got tired and hungry so that mom’s took me home and got me all settled in for bed.  But just as I was nodding off, I heard Mommy on the phone telling someone that it would be okay if we did my surgery tomorrow instead of Tuesday.  I didn’t really care too much, because I was happy rocking in Mama C’s arms but suddenly the mom’s were hurrying around the house: getting bags packed, calling people, just trying to get organized.  I didn’t mind because I was still sleeping but soon that would stop too.  Before I knew it, Mommy was waking me up (again! twice in one day is a mean thing to do!), taking off my diaper and giving me to Mama C.  For a minute I thought we were just going to cuddle, but I knew something was bad when she kept whispering “I’m sorry” in my ear.  Then, like a really bad surprise, I was in the bathtub!! It was so late and I was so tired that I barely knew what to do with myself – I was actually really quiet for a while and the mom’s said they were always going to wake me up and bathe me, but to show them I started screaming soon.  The nurse told the mom’s that I had to have a bath with special soap and then very clean pajamas before I go for my operation.

So, we finally finished up and Mama C rocked me back to sleep while Mommy went to bed too.  Mama C is staying up a little bit longer so that I can have one last meal before tomorrow.  I think she’ll be posting about my surgery throughout the day tomorrow, but don’t worry – I’m totally tough and I’ll sail through this surgery and see you all when I wake up!

Busy Bee

My datebook is very busy for the rest of this week.  Last night I had a wonderful surprise when my Theresa, Jason and Joey all came over for dinner.    Joey loves me so much and just kept trying to hug me and squeeze me – at one point, I was sitting on his belly and he just kept pulling me down to hug him some more.  Joey also really loves my dog Ellie, which is good, because I’m too little to be much fun for Ellie right now, so Joey can keep her entertained until I’m big enough to play too.  Joey loves our cat, Morse, too but Morse didn’t really love him back.  I think Morse only likes the mom’s because she doesn’t even come around me very much.  Just wait until I’m big enough to crawl after her and pull her tail, maybe then she’ll love me!

Today was swimming lessons with Thor and Dano, which is always a fun way to spend a morning.  Thor was very excited to see me and kept coming over to give me kisses.  I’m not sure how Dano feels about me, but I think he’s getting a little more interested.  Mama C kept talking to Auntie CC and Jenna about my surgery, and how excited she is to see how much I’m going to change after it’s all done.  They also talked about how they think I’m growing and I’m excited to tell them that they’re right!

After swimming, Mama C and I got home just in time to go to see my doctor at Children’s Aid for my very last visit with them.  I was very happy because my foster mom Barb was there and she already has a new foster baby – a teeny tiny 3-week old baby named Triston.  He’s getting adopted too and Mommy kept telling Barb to watch out because Mama C might try and take him too.  I think it would be really fun to have a brother or sister, but I’m not ready to share the mom’s yet.  I also got to see my adoption workers, Jacquie and Alexis, who were there to be part of my big day.  And most importantly, I got to see “Cute Joe” who is the nurse at the doctor’s and all of the ladies think he’s very cute (but not as cute as me!).  Even the mom’s think he’s wonderful, but not because he’s cute but because he’s just so nice.  He weighed and measured me and everyone was so happy with how much I’ve grown! I’m in the 50th percentile for weight (11.5 pounds, which is impressive with how much I vomit) and I’m in the 90th percentile for height (66cm – I’m almost a giant!).  This is compared to other kids with Down Syndrome because we’re always a bit smaller than typical kids, so I still need my weight to catch up with my height, but everyone is really happy that I’m growing so much.  Cute Joe became less cute when he gave me my 6 month needles, which made me cry a lot but the mom’s were still happy because he offered to help them find a pediatrician (a doctor just for kids and something that’s very hard to find in Toronto).

After seeing Cute Joe and my doctor, the mom’s and I said goodbye to Alexis and foster mom Barb (who’s going on a much deserved vacation!) and we went a signed all of the paperwork that said that I’m officially placed for adoption with the mom’s!  I didn’t see what was so exciting because the adoption won’t be final for almost a whole year still (the mom’s are on something called “Adoption Probation”) but it was the first time that a peice of paper said my whole new name and everyone today called me Lily, instead of Natalia (which was the name my birth parents gave me but is now my middle name).

I was super tired by the time we got home, so I just stayed up long enough to eat and have a bath and then I crashed out, which is good because we have to be up super early tomorrow because we have something called Pre-Op at Sick Kids hospital for my heart surgery next week.   We get to spend the whole day at Sick Kids because they’re going to take some blood (I’m not happy about that) and then a chest x-ray.  Then we get to do a tour of the hospital and help the mom’s know where everything is going to be while we’re all there, especially Mama C because she’ll be staying at the hospital with me.  Then we’ll get to meet my surgeon and some of the rest of their team so that they can explain to the mom’s exactly what they’re going to do to make my heart better.

Then on Friday morning, we have to go back to Sick Kids (it’s kinda like my second home) to see the people at the GI clinic, who will talk to the mom’s about my Ng tube and about maybe moving to a G-tube, which will help make my reflux a bit better, which hopefully means that I’ll be able to start putting food in my mouth.  I think people are a little worried that if I get the G-tube that everyone will just be happy about that and will forget about teaching me how to eat with my mouth, but I’m pretty sure that the mom’s won’t let that happen.  I know that they’re already making me work hard – they helped me learn to suck my thumb and are now working on sucking a pacifier that’s been dipped in my formula.  I think it will take some time for me to re-learn how to do it, but I think that I can.  So, we’ll go and talk to the GI people and hopefully the mom’s can work with them to come up with something that works for everyone.

With all of this activity, I’m going to be super excited for the weekend.  I hear it’s something called Father’s Day.  I have the mom’s, so maybe for me this will just be Grandfather’s day instead!

Everything’s Gonna Be Alright

I’ve been home for about 48 hours now and I have to say that this isn’t such a bad gig.  My room rocks, although I guess it’s not quite done yet because Mama C keeps bugging Mommy about doing something called “hanging pictures”.  I don’t know what it means but it sounds important.  My dog Ellie keeps sticking her nose in my face, especially when I’m crying, to make sure that I’m still hanging tough  and people just keep coming over to check out how cute I am (I try really hard to please in that category – I’m being more smiley with everyone and they think it’s pretty adorable.  I saw Mee Maw and Uncle Jeff and Auntie Marina.  Grandma and Grandpa E came over this morning, and I met two new people, Mike and Rita.  I like Mike a lot – he’s pretty funny and they’re cooking me up a friend right now so soon I’ll have even more people to hang out with.

Yesterday Mama C and I had a really nice and relaxing morning.  I ate really well for her so we weren’t so stressed out about my ng tube flying all over the place.  We sang some songs and had some tummy time before she got me all dressed up in one of my new outfits before Mommy came and took me out on an adventure to somewhere called the Earl Beatty Fun Fair.  There were so many things there – a bouncy slide, twisty ladders, a ball hockey tournament and of course lots of people who were very surprised to meet me! Mommy had kept very quiet about my arrival (just in case I decided to go and live somewhere else) so a lot of people from her work and who have known her for a long time were very happy to meet me.

I’m new here…

My name is Lily. I’m 5 months old and up until today my life has been a little topsy turvy, but from today on (or so they tell me) things are hopefully going to be a little more stable.

See, I’m getting this thing called Adopted. It means that I’m going to have 2 people (Mama C and Mommy) who love me so much that they want me to come and live with them forever! Up until now I’ve been living with Barb, who is very wonderful but she was just a pit stop until I could get to my forever home.

Mama C and Mommy tell me that I also have a dog named Ellie. I don’t really get what a dog is but I think it has something to do with this thing that keeps sticking it’s cold wet nose in my bassinet. I hope she’s friendly though because I think I’d like to have a lot of new adventures with her.

I also have this thing called Down Syndrome (it means that I have more chromosomes than most people – frankly I think it’s kind of cool). It means that I’m going to have to live up to my nickname: TigerLily and be a fighter because some things in life are going to take a little more work for me. Having Down Syndrome also seems to mean that I have some problems with my heart and this thing that my mom’s call “reflux” which I’ve learned means that I vomit a lot and I really don’t like it. But hopefully before the end of the summer I’m going to have surgery (another one – I had one when I was just teeny tiny so I’m an old pro at that) that will fix my heart and then maybe the vomiting too.

But for now that’s my story. So far my life has been a pretty big adventure so hopefully with this new Ellie dog-person I’ll have a lot more to share.