A Camp Away from Home

Have we ever known Lily to just let a happy event happen without throwing in her own little wrench? We went to Disney World and she pulled out her own g-tube for the first time, this time she had a playground donated and she got an infection around her stoma!  We actually felt really bad for her – the entire site was swollen and gross looking, so after a playground visit with Theresa, Jason and Joey, it was off to the paediatric walk-in clinic for an antibiotic and then an appointment at Sick Kids the next morning for an ultrasound (to make sure that there was no abscess around the inside of her stoma that would rupture if we had to pull the g-tube).  Luckily, the antibiotics had already started working so it was determined that we could wait a week or so to change the g-tube, which would give it a chance to heal completely.  But we’ll be back to to Sick Kids just before the beginning of school to get it changed!

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Theresa and Joey, driving our new ship!

Totally obsessed with the bubble tubes at IGT

Totally obsessed with the bubble tubes at IGT

This little bug figured out how to get over the step and onto the porch floor without any momma assistance!

This little bug figured out how to get over the step and onto the porch floor without any momma assistance!

After all of that excitement there was nothing we were looking forward to more than our annual week at Camp JAC.  Because of the playground build, we were there a week later than usual and it was funny how much the timing threw us off; for the past 5 years, camp was always the last hooray of summer before we came back to the city and started to see the usual signs that the summer was wrapping up: the weather is a bit cooler, the pools are starting to get less busy and the CNE has begun.  This year, the CNE opened before we even left and we didn’t spend the August meteor shower laying out and watching it surrounded by our campers who want to do this cool thing but usually can’t pay attention long enough to actually see it happen.

But finally we arrived and it was like an amazing homecoming.  From the minute the campers arrived, it was as though we had never left. I don’t think there is a week in the year where Jess and I laugh so much for so many days in a row.  Between the jokes, campfires and lazy afternoons spent making friendship bracelets on the swing we always end up leaving feeling exhausted but revived.  As each year passes, I find that I look forward to this week more and more and I feel less like I part of giving these campers a good time and more like they give so much more to me.   The kindness and sense of family that exists between them makes my heart happy every single day.  And really, truly, it’s impossible to be unhappy when a camper interrupts your thoughts with this exchange:

Grace: “Crystal”

Me: “Yes Grace?” (because this is the 18th time she’s said my name in 5 minutes)

Grace: “I love your eyes”

 

 

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What I especially love is just the absolute and complete acceptance of our family to our campers.  They have never questioned that Jessica and I are a family, and when Lily came along, they never questioned where her dad was, they just knew and accepted that we were both her mom’s.  This year, we ended up having a long talk one afternoon about how Lily was adopted and what that meant.  We explained to them that Lily was born to another mom and dad, but they weren’t sure they could take care of her, and so they let Jess and I adopt Lily.  They asked if Lily ever saw her other mom and dad and we explained that she did and this just made so much sense to them – of course she would see them, they’re her family too.  Sometimes you have to wish that life was this easy to explain to everyone.

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The week did not go off entirely smoothly though.  On Sunday morning I woke up with a sore throat, but it’s very dry at the house and so I thought that my sinus’ were just irritated.  As the day went on I felt worse and worse and by the time I went to bed, I could feel that I had a bit of a fever.  I was awake off and on all night and even with taking tylenol every 4 hours, I couldn’t get it to break.  When I finally went and took a look in the mirror, I realized that my throat was so swollen and gross that I could barely see the back of it.  Unfortunately, we were in a small town and so my only option (for lack of a walk-in clinic) was the town ER.  After much shorter of a wait than I expected, I walked away with an unknown diagnosis but an IV in my hand and clinic visit booked at the closest CCAC office to go and get set up with an infusion pump so that I could have IV antibiotics administered every 8 hours for the next 3 days.  The poor ENT actually thought that I had an abscess on my right tonsil but my throat was so swollen that she couldn’t get in far enough to see.  The hope was that the antibiotic would treat it enough to bring the swelling down and get a good picture of what was going on.  So, once a day, Jess had to drive me into the nearest city and wait for the nurses there to check my IV spot, move it if I had blown the vein – which of course I did on the second day – and then attach a new bag to my IV.  Luckily when I went back to the ER on Thursday morning to get reassessed, they were much happier with the state of my throat and there is no abscess to be seen so I’m off the hook with another week of oral antibiotics and a strong recommendation to speak to my family doctor about having my tonsils removed – because apparently I’ve gone back in time to being 8 years old.

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In the end though, it was a fantastic week, surrounded by some of the best people I know and sadly, before we knew it, it was over and we were back on the road to our own beds, a dinner with grandpa and Uncle Jeff,  and a surprise in the mail for Lily – a new friend, who came with her own g-tube! Not only was it totally unexpected, we also have no idea where she came from, but are sending lots of thanks to this incredibly kind person!

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Remedy For A No-Sleep Night

Lily is still awake. She’s not feeling great and has been off. She’s impossible to distract, crying unless she’s being held and generally just messy. It’s been, what we call, in this house, a 2 parent day – where it is literally impossible to put her down for the fear of her vomiting again because she’s crying so hard. For a girl whose meals are measured out strictly for calories, vomit is something we try to avoid at all costs. Luckily we had more than a few good days leading up to this patch and so I’ve been living in those memories during the worst parts of today…

Ready for the first swim of the summer...and loving it.  A lifeguard momma's dream come true!

Ready for the first swim of the summer…and loving it. A lifeguard momma’s dream come true!

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Deciding that birthday cake frosting is worth licking the plate clean

Deciding that birthday cake frosting is worth licking the plate clean

 

Sister really loves Canada

Sister really loves Canada

Watching the annual East York Canada Day parade

Watching the annual East York Canada Day parade

The first time she's ever rolled her eyes at me taking photos...

The first time she’s ever rolled her eyes at me taking photos…

And sometimes that’s all you need – some good, warm and fuzzy memories to get you through the nights that seem to have “no sleep” written all over them. Look for me tomorrow at Cardiac Kids, where I’ll be talking a little more about memories and when I really began to feel like Lily’s mom.

Head and Shoulders…

I sometimes feel as though that as a whole, we need to look at our calendars and start thinking about adopting Rosh Hashanah as the new year for everyone.  I don’t think that I’m alone in thinking that September always feels more like the new year than January does.  Be it the years of school starting, the fresh winds blowing out the hot stale air of summer or the fact that I work in Aquatics and at the end of every summer we get to relax a bit and breathe a little easier, but in my heart of hearts, fall is the start of the new year for me.

It was felt incredibly true just this past week, as Lily and I strolled out of Holland Bloorview (a kids rehab hospital here in Toronto), feeling as though we had uncovered some holy grail of support that we didn’t realize had been missing from our lives.  Well, that’s not entirely true – we knew it was missing, so maybe it’s more accurate to say that we felt as though we had uncovered some holy grail of support that we didn’t realize we were longing for.  But, in that moment, walking in the sunshine, I felt as though we were starting fresh.

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If only you knew how long it took to get her hair into braids. Sister hates having her hair done.

For the past year, Jess and I have been watching Lily’s weight and growing more concerned.  Lily is a tiny girl and always looks much younger than her actual age (we call it her chronological age – more on that in a bit) and while we tend to embrace it and laugh about how lucky we are that we get a baby for an extra long time, since December we’ve been noticing that she hasn’t been gaining weight.  Notice that I didn’t say “much weight” or “weight steadily”, I’m saying weight – any weight.  In fact, Lily has only gained 1 pound in the last 12 months – from 21 pounds in October 2012 to 22 pounds in September 2013.  Obviously, this is not an ideal situation – kids are supposed to grow, and while she’s clearly grown in height, her body weight is not keeping up with her.  Our pediatrician kept telling us that she was “growing so nicely”, and other people would comment on how big she was getting, but we knew that this wasn’t right.   We kept saying to each other that what she really needed was to switch to a specialized formula so that she could take in more calories, but when we asked the dietician, she simply switched us to a different formula with the same calorie content and told us to “make her eat more.”

This statement simultaneously made us laugh and want to outlash violently at her.  “Oh, is THAT all we have to do?” Make her eat more? Clearly that’s the answer we’ve been missing all of our lives!”

I’ve talked a lot about Lily’s heart and her brain and her eyes, and while I’ve mentioned the g-tube and the need for it, I don’t think I’ve explained the history of why eating has been such a challenge for her.  When Lily had her first open-heart surgery, she was 7 days old and incredibly tiny.  At somepoint, during her intubation, they severed one of her vocal cords (sadly, this is common in pediatric heart surguries).  In order to give her vocal cords the time to heal, they began to feed her through an NG (nasogastric) tube.  This is just a thin tube that winds down from the nose and down into the stomach.  Once it was safe for her to eat again, it was discovered that she had developed a feeding aversion.  Again this is something that is very common in kids who’ve had a surgeries at a young age, as they’ve been traumatized from the multitude of intubations, tubing and masks that they’ve had to put up with and now don’t trust anything around their mouths.   Because of that aversion, Lily stopped eatting anything orally and then lost the ability to suck, swallow and breathe while drinking from a bottle.  When we adopted Lily she was still being fed exclusively through the NG tube and that just became part of our life.

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The hippo was just one of Jess’ many amazing hypafix animals used to hold the NG tube in place

After her second open-heart surgery and cardiac arrest, we thought we had come across a small miracle – in what we started to call, “the reset”, Lily suddenly gained the natural inclination to suck and so we started to work on feeding her again with the help of our amazing OT Lisa from Sick Kids.  Sadly, the miracle was a little short lived, when we found out, via a video swallow study, that Lily was doing something called “Silent Aspiration”.    For most people, when food or liquid goes down “the wrong hole” (the trachea), we cough or choke or gag because this is our bodies way of protecting our airway against something that’s not supposed to be there.   In Lily’s case, her body doesn’t protect itself and anything thinner than the consistency of pudding would go right down her trachea and into her lungs.  When this happens, it puts a child at risk for many complications, including aspiration pneumonia (think of secondary drowning).  What this means, is that while we’ve been working on feeding we have had to be incredibly mindful of what her body is doing when we’re trying to get her to use her mouth to eat.  We’ve had to limit the types of food we can give her, thicken them to make them safe and then constantly monitor how’s she swallowing them and whether she’s just letting the food go down or if she’s controlling what happens to that food.  The other part to that is that when she’s sick or even when she’s teething – anything that causes some extra buildup, we need to limit what we’re giving her because her body can’t handle the extra work.  Once we were released from Sick Kids, she was doing very well and we were really happy with the progress she was making, but then we had a much bigger set back because of the seizures that she developed.  The medication that they used to treat the seizures caused Lily’s muscle tone to weaken, which in children with Down Syndrome, is usually quite weak to begin with .  This meant that she no longer had the muscle control to eat safely.  That put an end to feeding for quite some time and it’s been a large struggle since then to interest her in eating and she’s lost most of the natural skill that comes with doing something over and over again.  So clearly, when we’re listening to someone say, “just make her eat more,” we laugh at them because if we could be doing that, we would have been doing that.

That’s where Holland Bloorview comes in.  This amazing facility has a feeding clinic that is staffed with doctors, occupational therapists, speech and language therapists and dieticians.  They all work as a cohesive team to observe and treat patients who are struggling the same way that Lily does.  Within an hour of our first appointment, they were giving us new techniques – ones that were right for Lily (which we could tell because they started working right away!), a plan for a follow-up swallow study to re-evaluate what is safe for her to eat, and they were putting her on a newer, high calorie, formula for her g-tube, which will help her gain weight and really start to grow.  Beyond that, they simply validated all of the concerns about her weight that we’ve been pushing for a year and really truly listened to what our concerns were for Lily’s long term ability to eat typically.  As nice as the g-tube is when we’re out and about, it would also be nice to watch Lily scarf down a bowl of pasta with her cousins.   I walked away, feeling empowered knowing that we had been right all along and we really do know our daughter best.

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Trying to poke Hef in the eye under the watchful gaze of Uncle Jeff

Just a bit north of her mouth, we had Lily’s pre-operative appointment with the anesthesia clinic at Sick Kids today.   A cancellation opened up a spot for Lily’s eye surgery sooner than we had anticipated and so she will now go in for the procedure on September 23rd.  There’s some confusion around what exactly is being done (one procedure or two), and so we won’t know how long we’ll be at Sick Kids until early next week when it’s clarified.  If they do the more difficult surgery – to help fix the strabismus – then anesthesia is going to recommend that she stay a bit longer for observation, because they will have to intubate her fully and that carries higher risks because of her lungs.  To be entirely honest, Jess and I would actually prefer that option.  We just know that Lily has a history of being a bit….tricky….so we’d rather be overly cautious, even if it means a night away from our own beds.

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So relaxed during her ultrasound – you’d think she had done it before…

We also made time for an ultrasound this afternoon to look at a funny anomaly on Lily’s chest.  Over her left nipple, just up from the scar from her first open-heart surgery, there is a small section that, for lack of a better word, pops out whenever she is crying or whining or doing anything that takes a little extra effort.  We were not very concerned with it previously, but mentioned it to our paediatrician with the thought that if it could be repaired, it would be ideal to have it done while Lily was already under anaesthesia, as opposed to bringing her back at a later time.  After looking at it today with the radiologist, it seems that it’s actually a section of her chest muscle that is thinner than it should be and so what we’re seeing is her lung expanding when she’s breathing harder.  It wasn’t confirmed with us, but it sounds as though it’s not something they can repair and so it’s just going to be lumped into another one of Lily’s lovely quirks.

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Making faces at Abby – because they’re best friends.

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

 

 

 

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.

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.

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!

A Rare Face…

A mom post tonight.  They were able to pull the temporary Ng tube yesterday because our Lily is doing so well with her G-tube feeds.  It’s a gorgeous face that’s been lurking behind that tube.  A tube, that we’re now seeing must have been far more irritating and uncomfortable then we had ever thought because the personality change we have seen in the last 24 hours is remarkable.  Lily has always been a happy, content baby but now she’s smiling all of the time, she let me brush her hair (getting all of the tangles out) and put in the pigtails without a peep and even let the nurse and I do her dressing change (which normally causes a total breakdown) without a single tear.  Between stretching out her vein and getting rid of the Ng tube, it feels like we’re bringing home an entirely new kid.  She’s amazing.

Lily – the (Ng) Tubeless Wonder!

I have had a really great week.  I was worried about saying that because it seems that I sometimes manage to jinx myself and say that things are going well and then something happens and then I’m stuck telling you about something crappy.  But so far this week is pretty good – I mean it is only Tuesday, but we take the good things as they come.

I had my heart catheter last week to try and patch up my tiny pulmonary vein.  In the end, the surgeon was not able to put a stent in because it’s made of metal and it would have blocked another vessel (which kind of defeats the point of putting the stent in).  That was not ideal because the stent really was the best option for my last left vein.  In the end, they were able to open a tiny little bit of my vein and it’s helping because my oxygen levels are sitting much higher but it wasn’t really a lot.  Now my left lung is only doing about 2% of the work, and my right lung is doing 98%.  It’s a lot of pressure on that one lung but hopefully this catheter. procedure will help to keep the pressures in my lungs lower than they were before I went to the catheter lab.  Now we just have to hope that it works for way longer than 6 weeks this time.  I get to see my cardiologist in 6 weeks and we’ll have a better idea then on how we move forward from here: how they’re going to monitor my veins and what other treatment options there are if my right lung decides that it doesn’t want to do as much work as we’re asking it to do.  My cardiologist did say that as long as my heart is good, she has kids who are 6 and 7 years old who just have one working lung so that’s what I’m aiming for!

The doctor’s were so impressed with how I was doing that they decided that I could come off of the ECG monitors completely and off of the oxygen monitor while the mom’s were awake (it goes back on when they’re sleeping so the nurses can track me).  I think that’s what made it the best week ever.  On Sunday, I had lots of visitors because it was Grandma’s birthday, so she and Grandpa and Uncle Jeff and Auntie Marina came to have something called birthday cake.  I got to try a little bit of this icing stuff and I really liked it.  But mostly, I liked being able to cuddle with Grandma – she’s so comfy that I went right to sleep.  I would have slept for Uncle Jeff but he kept sticking his tongue out at me and trying to make me laugh.  I decided then that I like Auntie Marina better.

Then on Monday, I got to eat from my bottle and I did really well.  Just as Mama C was attaching my Ng tube to top off my dinner, Auntie CC, Uncle Rico and my Thor came to have their dinner with me!! (And bring Mama C some dinner too).  I had so much fun! Mama C put the mat down on the floor for me and my Thor and we hung out and played for so long.  He cuddled me and called me his “sweet sweet baby”, and he patted my tummy, sang me songs and then tried to teach me how to hold my feet in the air.  I’m not quite strong enough to do it, but if Thor just waits a little bit I bet that I’ll catch up soon.

Then today was G-tube day! Finally, after all of these months of having this stinking Ng tube in my nose, the doctor’s took me to the operating room this morning and put in my Gtube.  I still have a temporary Ng tube in, just in case we run into any problems and they need to feed me or give me medicine, but later tonight (12 hours later), the nurse will give me some clear fluids and I’ll start using my new tube! The mom’s are really happy that they’re going to be able to see my gorgeous face all of the time now but they were a little sad when they had to go to the Specialty Food Shop and buy my new G-tube pump, feeding bags, extenders, clamps, clips and doo dads.  I don’t know what any of this stuff means, but if it means that I get to eat without throwing up, then I’m all for it.  Plus it did come with a cool backpack that made Mama C happy – she says that it’s the perfect size to throw on my stroller.

So, I’m in some pain tonight, because the G-tube does hurt a little bit at first.  They gave me some morphine earlier but now I seem to be doing okay just on Tylenol.  Mama C asked the nurse to give me a little more morphine around midnight so that I sleep really well and the pain doesn’t wake me up, but hopefully tomorrow it will be even less and I can go back to being the happy, smiley girl that I usually am.  Then the doctor’s say that if everything heals well from my G-tube, I could possibly be home before the weekend! I’m not counting on it, but a girl can dream….