Omaha and Beyond

Our trip to Omaha last week was amazing. We knew going into adopting FangFang that the medical care necessary for a child with osteogenesis imperfecta (OI) would be significant. What a blessing to be able to see a specialist in every single related area all at once!

We arrived on Tuesday night and checked in at Rainbow House, which is right down the street from Omaha’s Children’s Hospital and is where most of the families getting treatment for kids with OI stay. We’d heard good things about it…and there were some good things…but actually our experience there was awful and ended up having repercussions that extended days (and dollars) beyond our stay. That’s all I’m going to say about that now, but we were pretty disappointed.

However, our experience at the hospital itself was great. It would be impossible for me to recommend the OI clinic in Omaha more highly!

Matt took Miranda, Mei Mei, and Atticus out for some adventures on Wednesday morning, and FangFang and I headed to the hospital. First up for her was a dexa scan, which measures bone density.

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Her bone density z-score actually came back at -5, which means the density of her bones is 5 standard deviations below the mean value for children her age – that is a huge difference.

We also did a bunch of x-rays – partly as a baseline, partly to give us more information about a recommended course of treatment now. I was really pleased – everyone was so helpful and easy to work with. I wanted an x-ray of her right humerus, as it had broken last September and felt a little off to me, but that wasn’t included in the standard list of initial x-rays, so the radiology nurses called right away to get an order from the OI clinic for that, so we could do it all at once.

FangFang and I had some time to kill in between appointments so hung out in the cafeteria for a while, about which she was pleased!

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You mean I can choose any snack I want, Mom?!?!

Next up was audiology. She clearly did not share their view that their attempt to look in her ear was a “no ouchie” situation, and after that she was pretty uninterested in their attempts to engage her further. We were able to measure that her ear drums do move, which is a good sign, and we’ll just leave the rest for next year.

Then we were free for the afternoon! Matt and Atticus went back to Rainbow House for naptime, and all 3 of the girls and I went to the hospital playroom for a play date! The online community of OI moms is so incredible, and 3 of us moms had discussed ahead of time the possibility of getting our girls, all with OI, all home from China within the last couple months, together. It was so cool to connect in person!

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The kiddos had fun playing, and we mamas got to chat, which was so nice!

Xiao (on the left) and FangFang were actually both at Agape Family Life House together in China, so they were reconnecting here for the first time since they were adopted! At first they seemed to have some cognitive dissonance seeing each other again in a totally new environment, but as our time went on, they warmed up to each other and were interacting really sweetly.

photo by Xiao's mama, Heather, of Snapshot Photography
photo by Xiao’s mama, Heather, of Snapshot Photography

It was so good to see. FangFang continued to ask about Xiao throughout our time in Omaha. We were so thankful it worked out for us to reunite these two, and we hope they can continue to enjoy this relationship in the years to come!

That evening we were able to reconnect with an old friend from our days in Chicagoland, who is now a professor at a nearby university, and we enjoyed a dinner out with him and his family.

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We really enjoyed that not only was this a trip to get some much needed medical care for FangFang, but we were also able to work in some fun times and connections with friends, both old and new!

Thursday was an early morning as we headed to clinic. We were given a large room (the better to house our large family!), and we settled in there. We just stayed in that same room all morning, and all of the doctors and medical professionals rotated around and came in and talked with us. It was awesome to see so many experts so quickly and easily!

First we met with Dr. Rush, the clinic director, and his team.

photo by FangFang!
photo by FangFang!

Then we saw Dr. Esposito, the world-renowned orthopedic surgeon. We also met with a social worker, a dentist, a physical therapist, an occupational therapist, and several nurses.

We learned so much. We went into this already having a lot of general knowledge but lacking the medical expertise to apply what we were learning to specifically what FangFang’s care would need to be. The doctors there believe that FangFang has Type IV moderate OI, which is what we’d expected. Her right femur shows evidence of having fractured and healed multiple times in the past, and it’s significantly bowed, so it will need to be rodded. Hopefully we can do that surgery before it fractures again, but it would also be great for her bones to be slightly more dense before we attempt it, so we’ll probably wait 4-6 months. That gives this mama a bit of time to prepare for the surgery, too, and try to prepare FangFang as well as possible. We’ll also have her left femur re-rodded at that time. It broke about 8 months ago and was rodded in China, but the rod has migrated a little bit, and that will start to get uncomfortable, so Dr. Esposito is recommending that we take care of both legs at the same time.

After clinic we split up. It was great for both Matt and me to be there and be able to ask questions and meet all of these key players on FangFang’s care team, and all 4 kids did amazingly well, given the expectation that they sit in a small room reasonably quietly for over 4 hours. There were some other things we needed to take care of that afternoon, so Matt took Madeleine CaiQun and Atticus with him to tackle that, and Miranda stayed with FangFang and me at the hospital. FangFang would be getting some bloodwork and her first stateside infusion of Pamidronate, which works to strengthen her bones and help them grow in their density.

Unfortunately, FangFang is not a super easy stick, and no matter how good they are, she is not happy for anyone to be poking at her veins, so that portion of the day was a bit traumatic for her. We got the infusion going, though, and then we were free to wander the halls!

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They had plenty of fun toys in the infusion center, but we hadn’t had lunch yet, so we went off in search of some food. I was so thankful that Miranda had stayed with me. She really has stepped into this role of big-sister-to-3 amazingly well, looking out for FangFang and offering hugs and playfulness and protection. Any time I needed to step away to use the bathroom, I asked a nurse to keep an eye on them, but it was Miranda who really engaged with FangFang and kept her happy.

We actually spent most of the afternoon in the surgery waiting room with Xiao’s parents. It was great to get to chat with them more…and they also helped me out a few times. I joked with Heather that everyone needed a friend who could serve them even while their own daughter was in surgery!

By the end of the day, we were super ready to be done. I hadn’t realized quite how long the whole process of getting the infusion would take, and we were finally discharged that evening about 12 hours after we’d checked in to the hospital that morning. Whew! It was a long day.

Between the reports of the suspected impending ice storm and our unhappiness with things at Rainbow House, we opted to drive home that night, so Matt and the other kiddos picked us up at the hospital when we were ready to go, and away we went, arriving home around 1:00 am.

The kiddos did really, really well with the whole trip, and we were so thankful we were able to get to Omaha so quickly and get such great input from so many experts in the field about how we can best care for FangFang. It was really awesome, and we’re so thankful for that opportunity.

The days ahead are rather daunting, as Matt heads back to work today. It has been such a blessing having him home in these early days as a family of 6, enabling us to have a much smoother transition than I suspect would otherwise have happened. However, he does have to return to teaching, and I’m somewhat intimidated by the prospect of having much longer days at home by myself with all 4 kiddos! Yesterday, a day during which Matt was gone for much longer than he was regularly away for most of winter break, was also a bit rough – I had moments of feeling quite triumphant…but that feeling was quickly squashed when both littles, enamored with the novelty of having Mom put them down for their naps instead of Dad, refused to sleep, rather complicating my plan for the day. We obviously have some kinks to work out. We’ll also be beginning the process of meeting with our local specialists (a local orthopedic surgeon, a PT evaluation, an OT evaluation, a school system evaluation, etc), and we’ll have to see how all of that goes and what the effects on our lives and schedules are going to be! Please pray for us as you are able!

Heading to Omaha This Week!

Later this week we’re packing up and heading to Omaha for their OI clinic! Why, you might ask, would we do that?

When we were reviewing FangFang’s file, before committing to pursuing adopting her, we’d gotten in touch with our pediatrician, who reached out to one of the orthopedic surgeons in the area. He let us know what treatment would generally entail (surgeries and bisphosphonate infusions) and said that care could all be handled locally. And it likely could. So why travel? Why, in fact, change our insurance coverage to a different, likely more expensive plan, solely so that we could travel?

Osteogenesis imperfecta is an extremely rare condition. Approximately 25,000 – 50,000 people in the United States are estimated to be affected with OI – which means that in a country with a population of approximately 324,349,000, less than 0.02% of the population is affected. There is an OI Clinic right here at Mizzou, which, based on the most current data, sees…6 people per year. In contrast, in the same year, the clinic in Omaha saw 176 people. That number is still so low – but it’s almost 30 times higher than the number seen at Mizzou. The doctors involved with the OI Clinic at Omaha Children’s Hospital are recognized internationally as experts in caring for children with OI. Their research relates to OI, they speak at OI conferences, they consult with other doctors, and their expertise shines through when they interact with parents. As we began to research OI and speak with other parents of kids with OI, they almost unanimously recommended making the trip to Omaha and having these doctors involved in our daughter’s care.

Additionally, the clinic has a multidisciplinary approach. In just a couple days, we’ll be able to have FangFang do all the testing that is needed to give her doctors the information they need as they determine the best course for her treatment going forward, and see all of the doctors we need to see. We’ll do x-rays to get a good look at her bones and a DEXA scan to measure bone density. She’ll have an audio test (because our hearing is dependent upon the tiny bones in our ears, people with OI are more likely than others to have hearing issues), and we may do bloodwork and run some genetic tests. Then we will meet with a whole team of doctors and other medical professionals, including an orthopedic surgeon, an endocrinologist, an audiologist, a dentist, a physical therapist, an occupational therapist, a nutritionist, and a social worker, each of whom can speak to some facet of FangFang’s condition and give us insight into how best to care for her.

And this girl? In combination with these doctors? She’s going to kick some OI butt 🙂

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These are going to be some long days, but I am oh-so-thankful for the opportunity to go to this clinic and see these experts. We want to do everything we can to care for FangFang as well as possible, and that means getting her to the OI experts who can best advise us and help us to care for her. We’re excited to meet them, excited to hear their thoughts on a treatment plan for FangFang, and excited to get started doing whatever they recommend!

The Littles

Upon my return from China with FangFang, Matt and I started referring to groupings of our kids as “the bigs” (Miranda and CaiQun) and “the littles” (Atticus and FangFang). It’s unclear to me whether this was an actual misunderstanding or a purposeful attempt at redefinition, but it became clear one day that Miranda was using the words rather differently. In her mind, “littles” was a category that included Atticus and FangFang but also CaiQun, whereas she, Miranda, was grouped together with Matt and me in the separate “bigs” category. This is classic Miranda. We’ve attempted several times to explain to her our conceptualization of the groupings, but she seems to remain unconvinced. However, for our purposes, “the littles” are our toddlers, Atticus and FangFang!

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The littles have an interesting relationship, and we’d anticipated this even while we were reviewing FangFang’s file, and we’d discussed it with our social worker. There is a term in adoption – “virtual twins” or “artificial twins.” It’s usually defined as two biologically unrelated children in the same family whose difference in age is less than 9 months. This is obviously not a naturally occurring phenomenon, and it can come with a number of issues, and some social workers and adoption agencies will not allow adoption of a child whose adoption would create a set of virtual twins.

Technically our big girls fall into this category, though they’ve often not seemed like it. Miranda has always been very verbally advanced, and Madeleine CaiQun seemed so much younger than her age when she came home, that they seemed farther apart developmentally than they were chronologically. Now they seem much closer to being twin-like, and I do think that exerts a certain amount of pressure on each of them, but at least right now, I don’t think it’s significantly different than the experience of siblings born within a couple years of each other, and honestly, I think they benefit from having each other. They are each others’ best friend and playmate.

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The littles are not technically virtual twins, as FangFang is 14 months older than Atticus. However, practically speaking, they are much more virtual twins than the bigs were. This is due in part to the effects that osteogenesis imperfecta has on FangFang’s size and gross motor skill development. She’s smaller than he is and is quite adept at scooting herself around the house on her butt but does not crawl, stand, or walk. Additionally, as she is transitioning from Mandarin to English, her English language capabilities are obviously behind his.

This small age gap was honestly, something I was excited about. We’re ready to be done having babies, and we are loving the age that our bigs are at. We like playing board games and doing puzzles. We are dorky people and love reading books together and doing homeschooling. We’re looking forward to being able to travel more, to visit museums and historical sites together. Having all of our kids pretty close in age will allow us to do a lot of that together as a family. And it will simplify homeschooling in some ways. But most of those are future advantages to which we’re looking forward. The current reality is that we have two toddlers, two in diapers, two who are not safe to stand alone in a parking lot, two who need help getting dressed, need help falling asleep, and on and on. Even as a somewhat experienced mama, an adoptive mama for several years, and a mama to artificial twins already, I think I slightly underestimated the challenge that this next year or two may really be!

The first few days home were particularly rough. If one little one was on my lap, the other wanted to be there. If I was holding one, it didn’t take long for the other to find me and request to be held, as well. It was pretty overwhelming.

Home almost 2 weeks now, I’m seeing some light. She’s actually more jealous for my attention than he is, which I had not anticipated – the foster home at which she was living was also caring for several other young children around her age, so I’m certain she did not receive continuous one-on-one attention, but she sometimes seems to think that’s a right to which she’s entitled! I’m doing my best to give both littles some good quality time, and I think they’re each getting used to the other’s presence.

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I still think this relationship is going to be a challenge. They’re both similar to your average 2-and-3-year-olds in terms of their interest in sharing, which is to say that they have no interest in sharing anything 99 times out of 100!

Right now, with Matt in the midst of winter break, we’re able to do a lot of tag-teaming in terms of parenting the two of them, but that’s obviously going to be reduced significantly in a week and a half when Matt goes back to work. That’s going to be…shall we say…interesting. Honestly, that’s going to be the true test of how we’re doing as a family of six, how we do once Matt returns to work. But it’s not here yet, and I’m trying to take things one day at a time!

I do see incredible glimmers of hope in this relationship. The other day, FangFang hurt her leg a bit, and as I was comforting her and looking at her leg to make sure it didn’t seem like a fracture, Atticus came over, saying, “Gentle, gentle,” and laid down right next to her. She rolled toward him and tucked into him, and they put their arms around each other and just rested that way.

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Cue mama happy tears!

We’re also really trying to limit competition between the two of them. Atticus, as a third child, has very few possessions that are truly his – most toys in our house are communally owned – but he does have a few things for which we defend his ownership, including a Little Tikes car, which he loves. Her eyes lit up when she saw it for the first time. We put her on it, and she was ecstatic, and asked repeatedly, “FangFang car?” He, of course, responded definitively, “No! Mine car!” Future requests for a turn for FangFang were also answered with a concrete “no,” so back to Amazon we went, and a second car arrived yesterday around lunch time. And now? Happy toddlers 🙂

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Of course we’re going to work with them on sharing and kindness – we’re not always going to have two of everything – but it’s also okay to give them each a few things that can be just theirs.

This dynamic is going to be interesting in the coming months and years! Of course, when you’re a part of our family, that’s forever, and we work through whatever challenges we face, and we do it together. I think this relationship will have its hard aspects, and we’ll work through those, but I also hope (and truly believe) that it’s going to be an incredible blessing for them both.

Home, Sweet Home! – Reunions and Introductions

When we walked in the door on Friday afternoon, Atticus was in the middle of his afternoon nap, and Matt had fallen asleep with him. I got to give my sweet Miranda girl a big hug, though! It was so good to see her – I’d missed her so much! FangFang was definitely a bit overwhelmed even with this smaller contingent of the family, so we took the introductions slowly at first. She stayed near me and gradually got acclimated to the others.

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Having some toys nearby – as we always do at our house! – definitely helped, and it wasn’t long before we were able to snap a pic of those 3 beautiful sisters all together! These girls (and their brother) have my heart.

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FangFang was really nervous around Miranda at first and didn’t want her nearby, and my heart broke for my big girl. As an adult who knew what to expect and knew the reasoning behind kids’ rejection of their new families, it was still a challenge for me to continue to pursue FangFang as she rejected me, and I knew that it would be so much harder for a six-year-old. Miranda and I talked about how it would take FangFang some time to warm up to everyone and get to know all of us and trust us, and it can be sad and frustrating when she rejects us, but our job is to love her no matter what, and we need to respect her wishes but also continue to move toward her in gentleness and kindness. Miranda flip-flopped some, sometimes willing and able to do that, and sometimes needing to walk away for a while, but the consistent undercurrent for her has been wanting to play with and love her new little sister, and I’m so thankful for her heart in that. Hours of effort on her part went into the creation of this happy pre-bedtime moment.

img_4820After a bit of time at home, we went upstairs and woke Matt and Atticus, and it was so good to see them again, too. I wasn’t sure how Atticus would respond to my return – Matt had been telling him I’d be home soon, and he had been increasingly frustrated with others’ presence instead of mine, telling my mom and dad and brother to go away. He was happy to see me, and the feeling was more than mutual! It was so good to hug my little buddy again! And of course it was great to see Matt, too 🙂

Atticus and FangFang quickly settled in to the dynamic that currently pretty well defines their relationship – jealousy of each others’ time with me!

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If one is on my lap, the other wants to be there, too. If one is being held, the other wants to be held, too. FangFang actually seems more jealous of Atticus than he is of her, which I would not have predicted. That makes me especially thankful that I took another kiddo to China with me, so FangFang did not have 2 weeks of completely undivided attention – I think coming home to sharing the limelight as one of four would have been even harder for her had she not had to share adults’ attention with another child while in China.

This dynamic is definitely a challenge for me, though I knew it was a likely possibility. I love, love, love my kiddos, but I am an introvert who appreciates a few moments of quiet, alone time a few times a day, and right now there’s not much of that other than at nap time and after bed time. I’m trying to strike a good balance, to cultivate attachment and bonding – hold FangFang when she wants to be held, sit with her when she wants me to sit with her, and play with her. But the reality is also that I have 3 other children for whom to care and a household that needs to be run. My mom was here through Monday, my dad through this morning, and my brother leaves tomorrow, and it’s been a huge blessing having them do so much of the food prep and dishes and cleaning and other household stuff. I’m trying to do the bare minimum to keep the household running, while also cultivating attachment with my newest baby, while also caring for my other kiddos, some of whom I was away from for 2 weeks, all while still being jet-lagged! It’s pretty exhausting. I am continually reminding myself of the counsel that I’ve given so many other adoptive mamas before – “You’ve only been home for a few days. This is not what the rest of your life is going to be like. Everyone is reeling right now from all the adjustments, and half your family is still super jet-lagged. It’ll be 2 weeks before you’re even fully over the jet-lag, and that makes such a difference. Give yourself time. This will get so much easier.” Repeat, repeat, repeat.

I am so thankful for the timing of our trip and the fact that Matt doesn’t have any teaching responsibilities right now or for the next couple weeks. And mostly I’m trying not to think about the fact that he is going to have to go back to work eventually – and we’re going to have to do school again someday – and I’ll have to go back to work, too – eek! We’ll just not think about that! Anyway, it is so sweet to see the beginnings of Matt’s new relationship with FangFang! Just look at that girl and that daddy – so sweet 🙂

ah, my heart melts!
ah, my heart melts!

She prefers me – she seems to have decided that since Danny’s and Sharon’s departure, I am her safe person, which makes sense, as she’s known everyone else for even less time than she’s known me. She’s getting more and more comfortable with Matt, though, and she’s been pretty open to him from day one.

I’d been hoping to stay awake that first day until the kids all went to bed around 9:00, but my body, having been awake since 3:30 AM central time and running on only about 8.5 hours of sleep during the entire 75 hours prior to that time, quietly gave up on its resistance to sleep and fell into a brief nap on the couch that evening. Thankfully FangFang was getting more and more comfortable with the other kiddos, and they happily scooted around the house with her. She doesn’t crawl but scoots herself around on her butt quite deftly, and the other kiddos, Miranda especially, have taken to doing so with her 🙂

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It was a good first evening together. These relationships are still growing. It’s always complicated adding a new member into a family, and I think that’s infinitely more true when the new family member is not a baby but a small child with already-formed opinions and desires and preferences of her own – some of which she can communicate and some not! But it’s also a beautiful thing, seeing those bonds truly start to come to fruition.

The next morning I posted this photo with the caption, “I’ve been awake since 4:30, and yet I’m still not dressed, and there are toys everywhere and suitcases still to unpack. AND I’M HOME WITH MATT AND ALL FOUR OF MY BABIES!!!!!!”

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It still feels surreal, being here with everyone. It’s hard, but it’s good, and I’m ever so thankful to have all four of my babies here, together, with Matt and me, all six of us home together before Christmas! The real journey lies ahead of us, but it’s a relief to have been able to start it now. I’m quite blessed.

Tuesday – Consulate Appointment, Shopping, Touring, and the Pearl River Cruise

Today was a full day – much fuller than I actually anticipated it would be. I got less sleep than anticipated, but it was partly for a good reason. FangFang woke up around 4:00 needing her diaper changed, so I took care of that and put her back in her crib, but about 5 minutes later, she burst into tears and announced that she wanted to be in my bed. I put her in bed with me, fully expecting her to tell me immediately that she wanted to go back to her own bed, but she didn’t, and she actually slept with me for the rest of the night! Unfortunately our night ended at 6:30, much too early for this night owl, as we had to meet our guide in the lobby at 7:30 to head over for our Consulate Appointment.

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At the Consulate Appointment, you present your child’s information and medical exam results to the Consulate, you take an oath that it’s all correct to the best of your knowledge, and they take your child’s passport to work on issuing the visa. That was our last official appointment here in China! Now we wait for FangFang’s visa to be issued so that she can legally enter the United States, at which point she will become a US citizen! It should arrive tomorrow afternoon, though the consulate recommends that adoptive families not leave the area until 2 days after their appointment, just in case of an unexpected delay.

We took advantage of the rest of this day to do some more exploration of Guangzhou. I mentioned to our guide, Elsie, that we’d like to visit the pearl market and the jade market, and she said on the way back from the Consulate Appointment that if Danny and Sharon and Mei Mei could get ready, we could go in about 20 minutes, so we threw things together in our room and got ready to head out!

Elsie took us to a jade store she recommends and at which she can get a significant discount and then to a store for pearls, and we looked around a bit at the surrounding stores, as well.

These ladies are FAST at putting together the pearl necklaces!
These ladies are FAST at putting together the pearl necklaces!
a pedestrian street near the Jade and Pearl Market building
a pedestrian street near the Jade and Pearl Market building

By the time we were done, we weren’t sure there was enough time to head back to the hotel and grab lunch in that area before we’d need to meet up with the rest of our group for the afternoon’s activities, so Elsie recommended a restaurant near our meeting spot, and we enjoyed a good lunch there!

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Then we met up with the rest of our group and went over to the GuangXiao Temple, an active Buddhist temple, which we enjoyed exploring, and Elsie told us some about its history and about Buddhism and its presence in China.

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Next we went to the One-link Market for toys and gifts. It’s sort of like a Chinese version of a combination of Pier One, Michael’s, Hobby Lobby, and a flea market. Here was a store at which we bought a few things.

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Shopping there with 2 small children was actually pretty stressful for me. The aisles are super narrow, so it’s impossible to keep far enough to the center that your kids cannot touch items on either side of the aisle, and it’s not laid out in any sort of logical fashion, so it’s not like you can just go in with an idea of what you want and get it – you have to wander and look around. And there are no western toilets. But…we were only there for about an hour and a half, and Daniel and Sharon had a number of gifts they wanted to buy and were able to get a lot there, and I was thankful we made it out without breaking anything.

We’d wanted to do the Pearl River Cruise, and its dock was near the One-link Market, whereas our hotel was across town, and Elsie wasn’t sure we’d have time to make it there and back before the cruise would depart, so we just went straight to the dock after our time at the market. We’d left for the pearl and jade market earlier thinking we’d just do that and then be back at the hotel to pack up for the rest of the day, so it was a little stressful not getting to return, but we made the best of it.

We actually arrived too early to board the boat itself, so we walked around some, saw some more sights, and found a western toilet for Madeleine CaiQun! And little FangFang, on her third day running of no-afternoon-nap (because her mommy keeps accepting offers for afternoon plans), took a brief snooze in the stroller 🙂

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Then we walked back to the dock for the Pearl River Cruise. We went ahead and did the dinner buffet with it, and the food was fine, though not spectacular. What really makes this a fun activity is getting to see all the lights, including those on the Canton Tower, one of the tallest buildings in the world.

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Then it was back to the hotel for a little bit of play time and getting ready for bed! FangFang couldn’t decide (or enjoyed making me go back and forth) whether she wanted to sleep in her crib or my bed, but she ultimately ended up in her bed, and we’ll see where she finishes the night!

There are some things we’re planning to do tomorrow, but we don’t have any early morning deadlines, so I’m hoping to get some good sleep tonight! It’s hard to believe, but tomorrow is our last full day in Guangzhou! I love being in China, in spite of its challenges, but I am so looking forward to being home and seeing Matt and Miranda and Atticus, plus my mom and my other family members who are arriving for Christmas. I’m also fantasizing about potable tap water and widespread availability of western toilets. There is so much I love about China, and I hope it’s not too many years before I’m back here again, but I also cannot wait to get home!!