Great Big Huge Leaps

The last couple of weeks have shown some huge developments in Lily’s developmental skills.  One of our new therapists from Holland Bloorview has just been this incredible ray of sunshine in our lives and it would be easy to chart Lily’s developments alongside Catherine’s visits.  We’ve been lucky to have some incredible therapists working with Lily, but something about Catherine just brings out the best in Lily.  She doesn’t coddle her, makes her expectations clear and is incredibly strict but also maintains this wonderfully sweet and calm demeanour.  From her first visit, Lily has responded to her in a way that we have never seen before and it is actually impossible for me to put into words how thankful we are for her appearance in our lives.  So, instead of trying to come up with words, which I fear will just sound flat, I’m going to leave this one to pictures and videos tonight…

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They had been working on standing, unassisted, for a couple of weeks.  One morning, with just a little balance help from Elmo, she got it.  The first time, she got it for about 3 seconds – and that was counting fast.  Catherine suggested we try for 5 seconds.  20 seconds later, Lily finally sat down.

A week later, Jess called me on FaceTime while I was at work.  All she said was, “watch this…”

Fast forward to this week. Jess called me on FaceTime again.  “I thought it was a fluke” she told me and then turned the camera onto Lily

I watched, in amazement at our girl, who has worked so hard to keep anything firmly in her hands, see the magnet, grab the magnet, hold the magnet and then decide to put it in the bowl.  All of those teeny tiny baby steps finally collided into a great big huge leap and a Momma, in tears, watching her little girl grow.

Life is good. Clearly someone deserves a nap.

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Seeing Things Clearly

So Lily has glasses.  Sorry, let me rephrase that, Lily is rocking glasses.  During her eye surgery last year, our ophthalmologist was able to get a better look at Lily’s eyes and after our follow-up appointment a couple of weeks ago, she told us that Lily was probably a bit near-sighted and recommended that we try glasses.  I can’t tell you how hesitant we have been about this whole situation – Lily barely lets us brush her hair out of her eyes without a mini freakout so the idea of putting (and keeping!) glasses on her face actually made us laugh.  But, obviously it was something that had to be done so just before her neurology appointment we ordered a pair of miraflex glasses for kids.  You would know Miraflex if you saw them – they’re the kids glasses that have the strong strap along the back; they are rubber and come in a rainbow of colours.  Jess was kind enough to let me pick a nice bright purple, with the caveat that when we we buy her next pair she gets to pick out the colour.  I do wonder if I’ve made a deal with the devil?

We got the call yesterday that they were ready and as I happened to be at a meeting downtown the timing was perfect for me to grab them on my way back to my office.  I stood there for a moment, next to the super busy Tim Hortons in Sick Kids, took the glasses out of their case and marvelled at just how tiny they were – they literally fit into the palm of my hand.  I was so excited to get home and try them on her, and so happy with myself because, shallowly, I had been a bit worried that these glasses would change her looks and, while I know it’s a mother’s bias, I think Lily, sans glasses, has the most beautiful face – it’s tiny and delicate and so incredibly feminine.  I had wondered if the glasses would take away from that….

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I could not have been more wrong.  These tiny glasses look so wonderfully adorable on her tiny, delicate, feminine face.  With her hair pulled back, we could draw a lightening bolt on her forehead and she would be perfect for the part of little Harry Potter.  And while, I know that her looks are not important and this is actually all about her eye health, I can’t help but look at her and be happy that she looks just as sweet with them on as she does with them off.  The glasses change her looks, but only as a different shade of ridiculously cute.  And when she has them on and she smiles her little smirky grin, I’m an instant puddle.

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And turning me into a puddle is certainly to her advantage this week.  It seems that something with Lily’s internal clock has misfired and suddenly this week, the hours between midnight and 5am and now, “party time” in Lily’s world.  It started on Friday night when she woke up crying, which is very unusual for her, at midnight and then, to my chagrin, stayed wide awake until I finally coaxed her to sleep at 7am.  Saturday night went well, but then Sunday saw it happen again, wide awake from 11:30pm until about 4:30am.  So, we’ve reintroduced an afternoon nap which she had given up about 6 months ago, and pushed her bedtime a little later and we’re hoping that helps get a good couple nights of sleep.  Sadly, we’ve also learned the hard way, that she’s become too reliant on us to, “put,” her to sleep instead of putting herself to sleep.  I am 100% guilty of the mom trap that I swore I would never get caught up in! I have usually been the bedtime parent but ever since I went back to work, that time just became so special to me.  I wanted to keep patting her to sleep, or, even worse, letting her fall asleep in my arms – it was my way of keeping her little but it seems that I have created a monster.  So, once we know that she’s back into a routine, it’s time to break the habit and tame the beast.

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I also wanted to say thank you for those of you who reached out after my last post to send us good, “smart doctor” thoughts for my dad.  I’m hopeful that they’ve been working because he has an appointment with a new surgeon on Monday morning and I’m taking that as a good sign.  I’m trying not to overthink anything until we’re actually in his office and hearing what they have in store for him, but it is certainly easier knowing that there are so many people rooting him on.  Keep the thoughts coming – they’ve never been more appreciated!

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Fierce

If, fifteen years ago, you had told me that I would be able to sit in a room, reading medical records and understand the following sentence, “loss of grey-white differentiation consistent with Hypoxic Ischemic Encephalopthy; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring the the posterior frontal lobe along the vertex”, I would have laughed you out of that room.  I skipped any part of grade 10 science that involved dissecting anything and followed that by never taking another science class again because words like, “ischemic”, and “encephalopthy”,  actually caused me stress.

But, here I am, fifteen years later, and that’s exactly how I spent my morning.

After Lily’s yearly visit with the thrombosis team at Sick Kids in November, we realized that there were some gaps in our knowledge of Lily’s medical history – nothing really significant, but things that you couldn’t know unless you had been beside her listening to daily rounds.  And, as those of you who really know me may be able to appreciate, I don’t like the feeling of not completely understanding what’s happening to someone I love.  That’s my role in our family – when someone gets sick, I start to research and I don’t stop until I have a very firm grasp on the entire scenario.  So, shortly afterwards, I made an appointment with the Health Records department at Sick Kids to come in and view Lily’s medical records and that’s where I spent my time this morning.  They were kind enough to set me up at a little round table and slapped 4 massive folders in front of me.  After a quick lesson on how the charts are arranged, they left me in peace to read to my hearts content.  I’m very happy to report that there were no major surprises: a small allergy that we didn’t know about, a little more family information from the social work department, and the knowledge that Lily’s PVS was diagnosed before she came into our care (we had always thought that it was simply suspected and the surgery she had shortly after she was placed with us confirmed it) and she had actually already lost function of her lower left pulmonary vein before she was 4 months old.

What was amazing to me, although it shouldn’t be surprising, is how surreal it felt to be staring at one or two sentences that actually fill our entire lives.  It’s amazing how words can do that, how sometimes they actually just say the bare minimum and not say anything at all.  If you were just someone reading the sentence, “loss of grey-white differentiation consistent with HIE; insult occurring in the bilateral parietal, temporal, occipital lobes and occurring in the posterior frontal lobe along the vertex,” you would just read the words.  Maybe you would understand that it means a brain injury that occurs when the brain is deprived of an adequate of oxygen and that the injury is shown mainly on both sides of 3 different lobes and at the back of a fourth.  But, you don’t really KNOW what it means; you don’t know that it means that Lily will be blind, totally and completely blind for 3 months and then suddenly one day start seeing again.  You don’t know that it means that Lily will not move the left side of her body for what feels like forever, and will struggle to sit up and to hold a toy until one day she sits up and then she bum scoots across the floor and then starts pulling things off of the coffee table and bounces in excitement when you hold up Hug Me Elmo because she’s so excited to play with him.  You don’t know that it means that Lily is delayed in her speech and sometimes you’re so afraid that you’re never going to get to experience that moment where she turns, looks up at you and calls you Mamma until one day she starts pulling on the cats tail and looks another child in the face and you’re a little less afraid.  Two sentences that seem like nothing more than words on a page, but that make up every single day of our lives.

But then you get to think about it a different way.  There were a lot of other words in those charts – a lot of words that basically said that a lot of people were uncertain about Lily’s future and suddenly you’re thinking about Lily and realizing that she is proving these 4 charts of words wrong.  Those words mean nothing when it comes to determining who Lily is and who she will become.  She has surpassed the expectations of so many people and this is just the beginning.  I left the medical records department and met my lovely wife and my incredible daughter and we all went upstairs and had our visit with Lily’s neurologist.  And instead of thinking about those two sentences, I kept thinking about the other words that have become a Lily mantra of sorts, the ones that, to me, sum up Lily far more accurately than anything written in those 4 charts…

“and though she be but little, she is fierce.”

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Looking Forward

The snow just keeps piling up and all I want to do is bury my body under 6 layers of blankets and my head in an amazing book, but already the sounds of September and school are starting to call.

A little background here.  When Lily was first placed with us, we had found an amazing preschool, here in Toronto, that would have been the ideal place for her.  It’s a half-day integrated program that focuses on the needs of children with developmental disabilities.  They provide a 1:1 ratio, have therapists on site, and they also help look outside of the school to access programs and funding that will assist the child to reach their maximum potential.  When we were moving the services from Lily’s foster mother to our home, we asked about this program and we were assured that Lily was already on the wait list.  So, we waited.  And then other kids that we knew were getting called and offered spots and we were still waiting.  Finally, our amazing OT looked into the situation and we were all shocked to discover that the referral had never been put in and Lily was not on the wait list.  At that time, we had to do a little scrambling to line up Lily’s therapies until she started kindergarten but luckily we have some amazing amazing people on Team Lily and there were no major gaps in her therapy time.

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The bigger downfall to this though, was that Lily did loose out on some of the amazing benefits that this program would have offered her.  In-home therapies are limited to how often they can see each child, and the preschool program provides that support on a daily basis.  At first, this wasn’t a huge impact – Lily was still recovering from the delays that her cardiac arrest and brain injury had caused and so we weren’t in a hurry to push her to do more than she was ready to do.  However, as I mentioned before, we’ve been seeing her make these huge leaps in her abilities and it’s clear that this kind of program would, now, be appropriate for her.

But now she’s 3.  Which, of course, means that preschool is no longer really an option and she is supposed to start JK in September and my freak-out has begun.  As much as I would love to try and stay positive about our school board and what resources and support they will be able to offer Lily, I do worry that it just won’t be enough.  I know that she is technically the right age to start school, but I do worry that she is not even remotely ready to start school.  School is big and everyone knows that there are not enough resources and supports to go around.  Lily is non-verbal, has limited gross and fine motor skills and I’m very worried that she will slip through the cracks because she’s easy.  It’s easy to put Lily down on the floor and let her play happily by herself, and in a classroom – even a small classroom – where there are other, busier, children, I can see how her needs could get overlooked.  Even with the hope of a support staff, the pessimist in me worries about the ability of that staff to get Lily to move forward.  We’ve had some amazing therapists and even they can find working with Lily challenging; with her developmental delays, her vision and her gtube, it’s difficult at times to find something that will motivate her enough to want to do the work.  If you don’t have the right level of patience, it would be easy to find her frustrating and give up on her.  We’ve had therapists who have gotten verbally frustrated with her and we’ve shown those therapists the door. We always say that Lily will do everything in, “Lily time,” but unless you’re willing to truly accept that, she is challenging.  And I am afraid that our school board won’t be able, or won’t have the resources, to find someone who really understands how to work with her.

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So, all of my hopes are in a single basket now (It’s like I’ve never listened to anything I’ve ever been taught!).  Now that Lily is 3, we’ve had to transfer her services (Occupational Therapy, Physical Therapy, Feeding assistance) from CCAC (Community Care Access Centres).  We’ve been lucky enough to have access to Holland Bloorview Kids Rehab Hospital – we see a developmental paediatrician there who will help to coordinate which services Lily will need until she’s 18.  As we were discovering all of the amazing things about Holland Bloorview (and there really are too many to list), we also discovered the Bloorview School Authority, which provides education to the children who are in-patient at Holland Bloorview for rehab.  In addition, they also offer an Integrated Education and Therapy program for JK to Grade 1, which is the exact type of program that we think could help Lily thrive.  The school offers physical, occupational and speech therapies alongside their educational programming.  They would coordinate with Lily’s therapists at Holland Bloorview to create an individual plan to help her build on the gains we’re already seeing. It’s a full-day kindergarten and transportation is provided through the Toronto District School Board,  In summary, it’s perfect.

Sadly, just because it’s perfect for Lily, doesn’t mean that it’s not perfect for a tonne of other children as well, and as such, the space for new children each year is very limited.  We were happy that we made it through the intial screening process (although I’m sure that has to be credited to all of the pushing that Jess did – she made sure that every single therapist or doctor who could give us a recommendation, did give us a recommendation!), but now we’re stuck in waiting limbo until a final decision is made.  In the meantime, it’s off to kindergarten registration for us.  We are very lucky because the school less than a block away actually houses our districts diagnostic kindergarten program so we wouldn’t need to worry about transportation to another school.  Plus the school itself is quite small, so it has the exact feel of a neighbourhood school that I want for Lily.  The school I went to as a child really felt like the centre of a community, and I do want Lily to grow up being immersed in community; it was one of the main reasons we reasons we choose this neighbourhood when we moved.  I am trying, really really trying, to stay positive and give in to the belief that whatever happens is meant to be.  That, if Lily isn’t accepted into Bloorview, that there is a reason for it: one that we don’t see and may not ever see, but that’s there regardless.  Although, I’m really keeping my fingers crossed that our paths our meant to head towards Bloorview – fingers crossed okay?

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Which Mom Am I?

When your child has a special need, regardless of whether it’s a developmental disability or a medically based complexity, parents want to champion these issues: to bring their knowledge and experiences to people so that we can educate and bring awareness to what makes our child special.  My problem is that I don’t know where to put that focus.  Am I a “down syndrome mom”, or a “heart mom”, or an “adoption mom”?  Lately, I’ve been finding that I really want to do more, but if I’m going to choose one area to throw my voice behind, how do I decide which mom I’m going to be?

One of the problems we have in just picking one, is trying to fit in.  I’ve mentioned it briefly before, but we don’t always know where the best place is for us.  We’re lesbians who chose to adopt, as opposed to trying to concieve our own biological child – a little more rare in the adoption world, where the saying is that “you come to adotion through loss.” That wasn’t the case for us – we always knew that we were going to adopt and were excited about that fact.

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We chose to adopt a child with Down Syndrome, in fact, leapt at the chance to adopt a child with Down Syndrome.  We often feel that some people are confused by that choice; in fact, we had one adoption worker who asked us directly, “you know that you could have a normal child, right?”.  We (well, Jess more than myself) had experience with Down Syndrome that helped make it an easy choice.  We knew that having a child with DS, along with the challenges, would bring us incredible joy.  But, for other DS parents, this wasn’t their experience and it’s hard for us to relate to the grieving/acceptance that they had to work through, and I think it’s hard for them to relate to us as well.  We love being a part of the DS community but sometimes it’s easy to feel a little like outsiders.

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Medically, as far as we’re concerned, Lily’s heart is actually a miracle.  I remember, so clearly, sitting in the small room with Lily’s surgeon and him confirming the PVS diagnosis with us.  He told us that our life was going to go one of 2 ways: 1) This was just how her veins are and she would have no other issues.  He quickly followed by saying he really didn’t think that was our road; or 2) The veins would close up completely and the disease would be fatal.  He couldn’t give us a timeline or any more information but that was it.  I remember, sitting for hours on my phone, trying to find ANY information I could about PVS and just being bombarded with the same sentence in every report: “PVS is extremely rare, progressive and usually fatal.”  But we’re here, 2.5 years later and Lily is winning.  Her CHD is the scariest part of our life, but when compared with other heart warriors, we’re actually so lucky.  Her original diagnosis of an AVSD and Coarct are common in kids with DS and the surgeries to fix those issues have held out and her heart – if you look at just her heart – is amazing.  I sometimes feel a sense of survivors guilt when it comes to being a “heart” mom because she has been doing so well.

The other issue is that with Lily, all of this is so interconnected that it feels impossible to seperate them and just focus on one. In my head, I compare her journey to a party. She started at the Down Syndrome Party (guests included low muscle tone, delayed motor skills & speech but a serious love of dancing) and that came hand in hand with her original heart conditions; her heart brought her PVS to the party; the PVS may have asked the Cardiac Arrest to come along or it just decided to crash the party to create some havoc, but it brought it’s groupies: HAI (hypoxic-anoxic brain injury) and CVI (cortical visual impairment).  Suddenly, they are all in this one gigantic room and you just have to shrug your shoulders and start handing out snacks.

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For this week though, National Down Syndrome Awareness Week, this is where my heart going to be.  The Canadian Down Syndrome Society has an amazing campaign going this year that highlights 14 (7 pairs) of people who truly celebrate Down Syndrome.  I’ll try and highlight some of my favourites over the week, but if you’re going to start anywhere – start with Max and Libby (who personally sum up exactly what kind of relationship I want Lily and her siblings to have).  As well, make sure you check out the CN Tower on November 4th as it’s shines blue and yellow to celebrate this amazing week!

Lastly, because it’s been a while, I just thought I’d share a little love from Lily and Gus.

Those Genetics…

A mom post tonight….

It’s become part of our routine to see Lily’s birth parents every few months. We really enjoy seeing them: watching the expression on their faces when they see how much she has grown and what she can do.  There is something immensely fulfilling about watching her birth dad hold her for an entire meal and just feeling the love he has for her fill the room and we are always very aware that we hit the jack-pot when it comes to birth parents.  We know that our situation is a little unique – most people think of open adoptions as exchanging photos and maybe a yearly visit – but despite my original thoughts, I’m so happy that this is the relationship we have, and will continue to have so that Lily can know her entire family – including her new little sister.

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Lily’s birth parents had a beautiful baby girl earlier this year and we were able to set up a visit so we could meet her.  It was certainly a bit surreal to sit across from the 4 of them and see the family that could have been – to see the resemblance between Lily and  this new baby, to see what characteristics they share even though they’re not together: the short catnaps, sucking on their bottom lips, their tiny ears.   We often make jokes about what Lily has “inherited” from us, but sometimes it’s incredibly cool to see genetics at work.

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We had a visit to the Eye Clinic at Sick Kids last week, which is not one of Lily’s favourite places.  Lily’s sight, prior to the Cardiac Arrest, was something that we were actually really pleased with.  She was lucky enough to not have any of the eye issues that kids with Down Syndrome are more prone to (cataracts, issues with focus, etc).  However, after her cardiac arrest, one of the biggest developments was a Cortical Visual Impairment and for a long time we were very fearful that she was completely blind.  We have been lucky to see a massive improvement with her eyesight but her right eye still shows a significant strabismus (turning in) and we’re still having some issues with her tear ducts watering.  So, after sitting through the dreaded eye drops and then cutting her nap short to have the doctors touch her eyes (ophthalmology appointments never go well in our house), it was decided that it’s time to book a surgery to fix both issues.  We don’t have a date booked as of yet, and we’re also getting in touch with our pediatrician about setting up a complex care consultation to hopefully deal with some other issues while she’s out for this surgery (we’re hoping to minimize the number of times she has to be put under anesthesia).  We don’t love the idea of surgery but when you weigh out the risk vs the benefits, we know that it’s time.

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Busy Busy Busy

I’m very popular here at Sick Kids and it keeps me very busy.  Everyday someone called “transport” comes and wheels me away in my bed, with Mama C trailing after us, to take me to see a new part of the hospital.  Sometimes, they get confused and don’t realize that I’ve already been to Ultrasound or Xray, but it’s still nice to get out of my room, so I don’t complain too much.  Plus, usually while Mama C and I are waiting for Ultrasound or Xray, people like to stop and talk to me – mostly about my hair.  Some little kids like to look at me because I’m just a baby and then they ask questions about my Ng tube, but it’s fun to meet new people so I don’t mind at all.  Plus, I understand why they’re checking me out, I am pretty cute.

 

 

 

 

 

 

 

 

 

 

All of these tests are trying to figure out the different things about me that like to play tricks.  I’ve had some ECG’s to look at my heart and lungs, an ultrasound to look at what the doctors were afraid was a hernia (it’s not, just a weak muscle), they’ve checked my ears (I hear really well), and they’ve checked out my eyes.  This was where we thought we had come across a problem.  They checked my eyes pretty soon after I got moved out of PICU and the tests showed that I wasn’t seeing things anymore.  While there was nothing actually wrong with my eyes, part of my brain that got injured didn’t know how to interpret what my eyes were seeing, so my eyes wouldn’t focus on anything and I couldn’t track things that you moved in front of me.  The only thing I was doing was moving my eyes if I heard a sound but even then I wouldn’t always do that.  So, the doctors gave the mom’s that news and of course, they were pretty upset.  But then, something happened! It’s officially not true, because we haven’t seen any more eye doctors yet, but everyone (and my everyone I mean the mom’s and my OT Lisa) think that I might be seeing more than the tests were showing.   I try really hard to look people in the eye when they’re talking to me and I’ve started moving my head to look at my butterfly mobile again.  Then, best of all, when I was in a dark room yesterday, Lisa put some moving pictures on the wall of bright coloured birds and as soon as she turned them on, my eyes got really big and I stopped crying.  Lisa’s pretty sure that even if the tests are saying one thing, I’m actually tricking the tests! The mom’s will never know for sure though because I don’t speak english yet.  They say that the person who figures out how to translate “baby” will make more money than anyone else in the whole wide world.

I’m still having a little trouble eating with my Ng tube, but it looks like that will be a good thing.  The mom’s talked to the G-tube nurse and then went to a class to teach them all about G-tubes and how to take care of mine when I get it.  Then, when we saw my doctors during rounds today, they said that I will probably get mine put in next week! The mom’s are really really happy about that because it means that they don’t have to be so worried about me aspirating food from my Ng tube anymore. It means that I won’t get to go home for at least another 2 weeks, but everyone thinks it’s for the best.   The G-tube is especially good because I decided to throw the mom’s one more bone and I am starting to remember how to suck a bottle again!  Lisa has been working with me a lot to help and I started doing so well that she was able to do a feeding study on me.  This is when they take a big machine and watch where my food goes when I swallow it.  It was really cool.  It showed Lisa that if I drink thin liquid (like regular formula or water), it goes down the wrong hole right away, so that’s not safe for me.  I also can’t have thin puree but I can have a medium puree (it’s my formula mixed with a lot of rice cereal) and I swallow it really safely and I don’t aspirate on it at all, even if i take too much.  So today, after all of my hard work, Mama C was able to feed me 50ml with a bottle!! We’re only going to try it once or twice a day for now, because it’s hard work, and it’s not like feeding a little baby because I have to be sitting in a special chair for now until I really get the hang of it, but everyone is really proud of me.  It’s not enough to make me grow, but it’s enough that I can keep working on it and try some other things too.  Hopefully by December I’ll be doing well enough that I can even eat some birthday cake!

 

 

 

 

 

 

 

 

 

 

AND – I told you I’ve been busy – I’m now allowed to go for walks with the mom’s in my stroller around the hospital.  I have to still wear my oxygen monitor, because sometimes my oxygen levels drop pretty quickly, but it’s still nice to be able to go and sit with the mom’s while they get lunch.  They even let me go to the toy store!! This means that maybe the next time my Thor comes to visit me, I can meet him downstairs and we can throw coins in the fountain together!