Coronavirus 2020: Why We Are Staying Home – And Why I’d Encourage You to Stay Home, Too, If You Can

Like most of the rest of the world, I have been following the news of the coronavirus closely for the last couple months. Having two daughters from China, I was particularly struck by reports of this new virus killing people and shutting down cities in that country that will always have a piece of my heart.

And then it spread – and now it is here in the States. And each of us is faced with the question – what should we do now? Even if we could trust the leaders of our country (and the evidence is clear that we cannot), each of us is responsible for ourselves, and, in a broader sense, we are all bound together as a society, and we share responsibility for what happens to us all. We are all responsible for making wise choices, but when there is no clear, competent leadership, we have an even greater individual responsibility.

Initial data indicates that without intervention, each person infected with the coronavirus transmits it to somewhere between 2 and 3 other people. The World Health Organization (WHO) states that its incubation period is probably between 1 and 14 days – meaning that people can transmit the virus to others for up to two weeks before they develop symptoms themselves. And they also state that, “older persons and persons with pre-existing medical conditions (such as high blood pressure, heart disease, lung disease, cancer or diabetes)  appear to develop serious illness more often than others.”

Its mortality rate, right now, seems to be around 3-4%. But, beyond that, we can see significant issues. For instance, “Around 20% of cases require hospitalization, 5% of cases require the Intensive Care Unit (ICU), and around 2.5% require very intensive help, with items such as ventilators or ECMO (extra-corporeal oxygenation).” Our hospital systems in America simply do not have the capacity to provide ICU care to the numbers of people who may need it. The same article states, “A few years ago, the US had a total of 250 ECMO machines…So if you suddenly have 100,000 people infected…Around 20,000 will require hospitalization, 5,000 will need the ICU, and 1,000 will need machines that we don’t have enough of today. And that’s just with 100,000 cases.”

As of yesterday, there were about 3,500 people who tested positive for the coronavirus in the States. However, one of our earliest failures in fighting this disease has been in testing. A Johns Hopkins physician was quoted last week (back when the official tally of cases was 1,600) as saying, “Don’t believe the numbers when you see, even on our Johns Hopkins website, that 1,600 Americans have the virus…No, that means 1,600 got the test, tested positive. There are probably 25 to 50 people who have the virus for every one person who is confirmed…I think we have between 50,000 and half a million cases right now walking around in the United States.” This article explains in great detail how we can estimate case numbers and project into the future.

There are no confirmed cases of the coronavirus in the city or county in which we live. But what does that mean? It certainly does not mean there are no cases. It means that there may be cases…but we don’t know it yet. And quite probably, those people who have the virus don’t know it yet either.

So what do we do?

I believe we need to start acting like there are cases here. And, as many are advocating, we need to do everything we can to flatten the curve. If everyone gets sick at once, our healthcare system (our hospitals, our ICUs, our ventilators, our ECMO machines, our doctors, our nurses) will be overwhelmed. This is already happening in Italy. They are having to make decisions about who to treat – who will live and who will likely die. No one wants that to happen here.

And there is something each and every one of us can do to work to prevent it. This brief Washington Post article with simulations does an amazing job explaining and showing why social distancing works. Please check it out. Look at what happens when everyone moves around normally. Look what happens when only one in four people continue to move around. And then look to see what the results are with only one in eight people moving around. The difference is dramatic.

Some people cannot stay home. Doctors and nurses, of course, cannot. My 66-year-old mother who is a Wisconsin county’s Director of Emergency Management cannot. We all need to eat, and those who work at grocery stores will continue to work. Many people have no savings and will be required by their employers to continue to come in to work. However, there are a great many of us who have tremendous privilege, who are able to stay at home. It would be impossible to get any of our cities to a point where everyone stays home 100% of the time – but can we get to a point where only one in eight of us are moving around regularly, or even one in four? Can we slow the spread of the coronavirus enough that we will truly flatten the curve, so that our healthcare systems and our doctors and nurses and other hospital staff members are not pushed beyond their capacities?

I hope so. Lives depend on it. You may be young and healthy, and likely you would be fine, even if you contract the virus (though there are no guarantees). But that is not true for everyone. The mortality rate for those over 80 is around 14%. China’s CDC indicates that the mortality rate, “was 10.5% for those with cardiovascular disease, 7.3% for those with diabetes, 6.3% for people with chronic respiratory diseases such as COPD, 6.0% for people with hypertension, and 5.6% for those with cancer.”

Within my little family, risks are high. I have exercise-induced asthma, which may (but also may not) be an additional risk factor. But for two members out of our family of six, their underlying medical conditions could make the coronavirus extremely dangerous for them. While we often think of osteogenesis imperfecta as primarily related to bones, it is actually a collagen disorder and therefore affects every system of the body. The OI Foundation reports that, “Respiratory complications are a leading cause of death for children and adults who have OI.” The coronavirus could be devastating for FangFang. Additionally and probably even more concerning, last year Matt was diagnosed with interstitial lung disease. His lung function is already so compromised that the prospect of him also facing a virus that attacks the lungs is terrifying. Most people who contract the coronavirus will be fine; would Matt and FangFang? It is less clear.

So what are we doing?

We are staying home. We are practicing extreme social distancing. We are canceling everything. I went grocery shopping on Saturday morning, and that will be our last grocery shopping trip for weeks, at minimum. We are not running errands. Mizzou has transitioned all in-person courses to be taught online, so Matt is able to teach from home. If he has to go in to campus for meetings or any other reason, he will, but he will do all he can from home. We are not attending church worship gatherings. Our kids are staying home from their homeschool enrichment group. Swim practice has been canceled through the end of March. We will not be doing horseback riding lessons. We will not go to the library or to the gym. We have canceled a spring break trip Matt was scheduled to take – unnecessary travel with thousands of other people through airports and on airplanes seems unwise at this time. We have rescheduled all non-urgent medical appointments. We are not visiting friends, and we are canceling visits from those who had planned to come to our home.

Would you consider doing the same? Will you help to flatten the curve? Will you do your part in reducing the risk to vulnerable populations, like the elderly – and like Matt and FangFang? Will you do what you can to protect our health care system and medical professionals? Some people cannot stay home – but if you can, would you please do so?

Maybe it will seem like an overreaction. But what if it doesn’t? What if we are facing an unprecedented pandemic? What if you could save lives with your decisions, by simply staying at home with your family? Would you do that?

Christmas 2019

This year we traveled to Wisconsin for Christmas, and it was the first year in quite a few that my brothers and I and my parents were all in the same place for Christmas! It was so good to see everyone and have that time together <3

My three youngest kiddos helped my mom decorate her tree (she promised to leave off the ornaments so they could assist – and this way there was no pressure for me to get out a tree and decorate, which was great, because I did not want to do it).

The next day was our extended family Christmas party, which included, of course, a game. My family is practically incapable of missing any opportunity for a competitive game.

We went bowling again 🙂

There was early morning art-making…

…and all-day-long snuggling with this girl <3

We’ve also outgrown my mother’s house (by which I mean that me having 4 kids means that I have put us in a position of having outgrown my mother’s house), so Danny and Sharon stayed at a hotel nearby, which wasn’t always ideal (particularly when Danny came down with pneumonia later in the week and wanted nothing more than to sleep all day), but it did give us an opportunity to go swimming – and all of the kids thought that swimming with uncles who can turn into train engines or throw you high in the air was pretty awesome 🙂

One thing we’ve done a couple times now that I’ve loved is had a family book discussion. This year we read and discussed Casey Cep’s Furious Hours: Murder, Fraud, and the Last Trial of Harper Lee. I always enjoy the opportunity to discuss books with other people, and our little family holiday book club has been a highlight for me.

I’ve always liked the idea of matching pajamas but hated the cost, but this year Miranda and I saw $5 matching fleece pants at Target, and that seemed like a good compromise. This was our Christmas morning photo (or 4 that Matt cropped together!).

We did our annual cookie decorating.

And of course there was a significant amount of game playing!

Everyone is really into Legos right now, and Atticus made several creations during our time in Wisconsin.

Miranda has been asking to get her ears pierced for a while now. Our stance on it has been that as long as you are old enough to care for your piercings appropriately, it is your body and your choice. However, as this is a “want” and not a “need,” it is something you either have to pay for yourself or request as a gift. Danny and Sharon said they would take Miranda to get her ears pierced for her Christmas present (and doing so in Wisconsin actually requires less documentation and is cheaper – yay!), so one afternoon, Sharon, Miranda, and I went and got her ears pierced. She looks so grown up <3

On our last day, Matt and I took advantage of the Discovery World membership we bought last year, when we realized that it was cheaper to buy an annual membership than to pay for one visit for our family of six! The kids were going a bit stir crazy, so it was nice to get out and give them a chance to run around (and, of course, to learn!).

It was so good to have this time with family and celebrate together, and I’m already looking forward to the next time we can see everyone again – as is Miranda, who has been writing letters to each of our family members, one by one, lobbying for future visits!

Fall Family Fun

Life has been full these past few months, and I’ve gotten behind on blogging. This blog serves several purposes, one of which is a record of sorts for our family. I love to look back and see where we’ve been, what we’ve done, and where we are now, and I hope that my kids will one day enjoy these records, as well.

And to that end, there are some fun memories I’d like to make sure I document this year for us!

Naturally, I am an introverted, intellectual homebody. My idea of a perfect day would have to include some time curled up on the couch with a blanket and a mug of tea and a good book. But I’m trying to grow in being more of a fun mom, creating memories for my kids and having special outings and adventures, and this fall we had several.

We took a morning and went with some friends from church to Hickory Ridge Orchard and took a tour and visited some animals. The chickens were a bit over-enthusiastic in their pursuit of the food Atticus was carrying, and he was not pleased!

The girls took it more in stride 😊

And then we enjoyed what was definitely a highlight for us – apple picking!

Having 5 apple-pickers, we’re able to get quite a few pretty quickly, and we came home with a respectable haul, to be used to make apple pie, applesauce, apple butter, and other assorted apple items!

Another Saturday this fall, Matt had to work, so the kids and I made the drive out to Longmeadow Rescue Ranch, where our friend Courtney works training horses, to enjoy one of their Wagon Days. We saw Twister paint…

…we enjoyed some of the biggest slices of pizza we’d ever seen from a food truck there for the afternoon…

…each kiddo got to enjoy a pony ride!

The littles, in particular, were thrilled with that experience. They’ve watched their older sisters taking horseback riding lessons, and they loved getting to participate in something similar. Atticus talked all day long about how was now a horse rider, too, and FangFang now refers to the pony she rode, Pal, as her best friend.

We also enjoyed some snow cones…

…and a wagon ride…

…though Miranda was not thrilled about having to wait for the wagon ride, and her expression shows it!

We walked around and visited many of the animals at the ranch, and the chickens were a particular favorite.

Miranda made this drawing of her favorite chicken on the way home!

The next week, we took an even longer trip, this time venturing up to Wisconsin to see the China Lights. In recent years, each fall a group of artists from China have decorated Boerner Botanical Gardens with lanterns, and this year the theme was pandas. FangFang is obsessed with pandas, and we knew she would be beside herself with excitement to see the exhibit, and it was taking place around her birthday. We’d looked at our calendar to see if we could fit in a quick trip to Wisconsin to make it work, but Matt just didn’t have any free blocks of time to do it. Courtney agreed to go with us, and plans were made! The trip was almost de-railed last minute, as three of our kids came down with strep throat (everyone but Madeleine CaiQun), but we were able to get everyone on antibiotics before we left so that they wouldn’t be contagious, and though we had a bit of anxiety about it, we went ahead with the trip, and we were really glad we went. There were some hard parts – sleep wasn’t great for kids who had sore throats (or their mama) – but it was neat to see this exhibit, and I always love giving our family the opportunity to experience different aspects of Chinese culture – and we got to see my mom a bit!

The next weekend, my dad and his boyfriend and my brothers and sister-in-law all came to Columbia for a visit, and we crammed in several fun fall activities! We all went out to Peach Tree Farm, went on a hayride, saw animals, and looked at some gigantic pumpkins.

That afternoon we had some fun at home, with Atticus using my brother Danny as a jungle gym and FangFang practicing her independent standing with my sister-in-law, Sharon!

Matt led the kids in their pumpkin carving endeavors, and the results were much more impressive than if I had been involved with the process 😉

We also enjoyed some outside time – David raked leaves with the big kids, and Danny taught Miranda how to ride her bike without training wheels – a big milestone for her!

We also took in a visit to the big tree.

Close on the heels of that visit was our Halloween fun – this year we had a dinosaur, a cat, a dragon, and a panda – pretty adorable!

I hope you had a fall full of fun activities, and I’m looking forward to seeing what our next season will hold for us!

Family Vacation 2018: South Dakota

After our time in Omaha, we headed off to phase two of our summer travels – a few days in South Dakota! Since we don’t live near any of our extended families, most of our trips have been focused on traveling to see them, but especially as our kids get older, we want to make it a priority to show them more of the world, as well. We thought that with the ages of our kids, a trip out to South Dakota could be a good fit – some tourist attractions and opportunities to learn about nature and history but no long days in museums (which would be heavenly for Matt and me and much less so for our children!), and it was close enough that we wouldn’t have to drive forever to get there.

We left Omaha on Saturday morning and drove out to Wall, South Dakota, where we were joined by my mom and brother David – it was so nice to get some time with them on this trip, too! After a night in the hotel, we got up and visited Wall Drug the next morning. The kids actually did a great job of browsing and enjoying the experience without asking for 50,000 toys, and at the end we let them each choose one item that we’d buy for them.

Then that afternoon we drove through the Badlands, which were beautiful beyond what I can describe.

Had I realized we’d be able to get out of the car and climb around, I would have put everyone in shoes other than flip flops! It worked out alright, though 🙂

For the rest of our time in South Dakota, we’d arranged to stay at an AirBnB, which, we’ve discovered, is really what makes vacations work for our family. Spending days at a time in a standard hotel room is too overwhelming, but having more space and being able to prepare our own meals makes everything so much more manageable.

The morning of our first day on the western edge of South Dakota was spent at its most well-known attraction – Mount Rushmore! The big kids and I will be starting to learn about American history this year, and this was a great introduction, giving us an opportunity to talk about some of the presidents and a bit about the history of our country.

Knowing that we were heading into some red states and that we already stand out as a multiracial family with a child who sometimes uses a wheelchair, I intentionally did not pack any of the kids’ and my political t-shirts. I hoped we’d be at least a tiny bit inconspicuous. Miranda does not share that desire, and she and I had the following exchange while at Mount Rushmore:

Me: “Why do you think that they chose those four presidents to be on the mountain?”
Miranda: “Umm, because they thought they were good ones?”
Me: “Yeah, I think you’re right.”
Miranda, loudly: “Well, they won’t be putting Donald Trump up there, that’s for sure!”

We’re hoping the rest of the country comes to its senses and joins her in that opinion soon, as well.

We went from Mount Rushmore to Crazy Horse, which Matt had seen about 30 years ago but which the rest of us had never visited. It was fascinating to hear about its history and construction and the plans for its completion and to compare and contrast it to Mount Rushmore. There was a bus tour that allowed us to get close to the monument itself, and we were so glad we took advantage of that opportunity. The bus driver doubled as a tour guide and gave us more information and stories about Crazy Horse and its construction, and it was great to see a closer view of what was actually happening. Seeing a monument of this size being financed privately and in conjunction with efforts to support Native Americans was so impressive.

The next day we drove out to Wyoming to see Devil’s Tower, something to which Matt had been looking forward for quite some time! The kids really loved it, too. Miranda and Atticus are enthusiastic climbers, and Miranda talked a lot about coming back to climb it someday (we saw several climbers while we were there!), and she enjoyed any opportunity to climb on the boulders around the path we walked around the landmark…and I spent much of my day trying to keep Atticus safe while he attempted to follow her!

The following day I got up early drove out to Rapid City (everything is so spread out in South Dakota!) to meet a friend for breakfast, one of my co-moderators in the Facebook parenting group I help to moderate. It was a joy to sit down with someone who just gets it, who parents a child who has lived through trauma and who subscribes to the same parenting philosophy Matt and I use in interacting with our kids. It was so nice to meet her and spend a few hours together!

Our van’s brakes had been grinding, and it was in desperate need of an oil change, so after my breakfast date, I called around to local repair shops and sat around for a couple hours while our brake pads were replaced and oil changed – not super exciting but necessary. I didn’t get back to the rest of the family until around 2:00, which limited our afternoon options, but Matt and David researched some choices, and we ended up taking a scenic drive and getting out and walking around a bit. South Dakota is so beautiful!

The next day it was time to head out, so we packed ourselves up and started the long drive back home. We had one more attraction to see along the way – the Corn Palace!

And then after an overnight stop in Omaha on the way back, we made it home 🙂 Overall, it was a great family vacation time. There was some drama, but overall, the kids did really well with the driving time, and we really enjoyed our time as a family in South Dakota. It was so nice to have my mom and David there, too. The kids love hanging out with them, and though our night time adult hangouts were shorter than we would have liked, it was good to get even those little bits of time. We got to enjoy experiencing a new place together and talking about our country and its history. All in all, I’d say it was a successful vacation!

Omaha 2018

Did you catch that title? “Omaha 2018.” No subtitle. In contrast to our four trips to Omaha in 2017, my hope has been that this would be our one 2018 Omaha excursion – but I knew that would largely be determined by what we found out during this trip.

About a week and a half ago, we loaded up our minivan and packed up our family of six and drove out to Omaha, where we were overdue for FangFang’s annual OI clinic visit. World-class practitioners in multiple specialties related to osteogenesis imperfecta (OI) work together in Omaha to provide a clinic experience that, to my knowledge, is unmatched.

We arrived on Tuesday night, and FangFang and I headed to the hospital on Wednesday for the testing that would give us valuable information about her growth, her bones, and her body in general. This year was a light year in that all we needed to do was a dexa scan (which measures bone density) and a collection of x-rays (that check the status of the rods she currently has placed in both femurs, both tibias, and her left humerus; show us the status of her spine; and generally look at how her bones are growing and whether there have been significant effects from any recent fractures).

The highlight of the day for us was seeing FangFang’s former foster sister, Xiao, whom she knew in China before we ever met her. Our families have stayed in touch since the girls have come home, and we hope to continue to be able to schedule their clinic visits together and maintain this relationship for them. Our children from China have so little from their pasts – these connections that we can help them keep are so special. And in each other, they each have a friend who truly understands, who is living life as a Chinese adoptee with OI. Those connections will likely be invaluable to them as they grow and begin to negotiate the world with increasing independence.

We’d actually hoped the reunion would be even larger. There is a third sweetheart, Gabby, who lived at the same foster home as FangFang and Xiao in China, and she recently came home and was scheduled for her first clinic appointment at the same time as us – but unfortunately, her older sister (also from China, also with OI) broke her femur the week before clinic, and their family was unable to travel ☹ That was such a bummer – we’d been so looking forward to seeing all of them! There are a few other families with kiddos from China who have OI with whom we hope to continue to maintain connections, as well. We’re so thankful for these sweet moments between Xiao and FangFang – even at 3 and 4, they delighted in seeing another child like them, using a wheelchair, having scars from rodding surgeries, occasionally sporting a splint – we’re going to do all we can to continue to facilitate these connections for our kiddos!

While FangFang and I did that testing, Matt took our other kids to a park, and once we were done, they came back for us and we all spent the rest of the afternoon playing at the park.

In an attempt at frugality, I’d booked all six of us in a standard hotel room for our time in Omaha. While it was certainly frugal, it was also rather miserable. We were all on top of each other all the time, the kids had no room to run around or play, and it was just generally an unpleasant situation. We ended up spending most of the waking hours during which we were at the hotel letting the kids watch tv, because it was our best strategy to keep the peace. And now we know. We can certainly handle standard hotel rooms for a one night stop or something of that sort, but for any extended stay, it is unwise!

We debated how to handle Thursday morning clinic – whether all of us should go, so Matt and I could both be present for all of these doctor meetings or whether it would be better for him to take the other kids to do something more entertaining, and FangFang and I could focus, undistracted, on our conversations. It would have been great to have both of us there for all of our conversations, but ultimately, we realized that as the researcher and doctor-appointment-attender parent, I was probably going to be negotiating 95% of those interactions, anyway, while Matt parented our kids, and it would probably be easier for him to parent them somewhere other than a hospital room 😉

FangFang and I were at the hospital by 7:45, and we got to chat a bit more with Xiao and her family before clinic started.

After a nurse got FangFang’s height and weight, we were taken to a room that would be our base of operations for the rest of the morning while doctors and other providers rotated around to talk with us about their individual areas of expertise as they related to FangFang.

First up, we saw Dr. Esposito and Dr. Wallace, the orthopedic surgeons. I knew that their assessment of how her bones and the rods she’s had inserted into many of them (both femurs, both tibias, and her right humerus) would largely determine whether we needed to make a planned return trip to Omaha any time this year – and, thankfully, they don’t believe that will be necessary! Of course, we may end up back there anyway – a significant fracture requiring surgery would mean a drive to Omaha for Dr. Esposito and Dr. Wallace to operate – but we at least don’t need to plan anything now! Her left femur rod is the one they have the most concern about. It was the earliest placed, and the surgery was done in China, and it will likely be the first to require revision, but they said that as long as she isn’t experiencing pain or limping, we should leave it alone. We looked at her spine, and her scoliosis is not particularly severe, and the wedging we can see on x-rays has improved in the last year, largely due to the Pamidronate treatments she receives. Essentially, everything looks pretty good from an orthopedic perspective!

We also met with a researcher for a 5-year longitudinal study being done out of Omaha, in conjunction with other research sites, collecting data about individuals with OI to use in research studies, and we’ll have FangFang start participating next year. There is not a great deal of research available related to OI, and we want to do anything we can to be part of developing that, hoping for more and better treatments in the future.

The endocrinology team was very happy with the improvements in FangFang’s bone density shown by the Dexa scan. It’s actually a bit confusing, knowing what the level of improvement was – there is a discrepancy between what the 2017 report shows as her 2017 measurements and what the 2018 report shows as her 2017 measurements, and no one was quite sure why. But, regardless, her 2018 numbers show either a 15% or a 30-40% increase over her 2017 numbers, so we’ll continue with her same level of Pamidronate treatment.

We also saw a dentist and a dietician. The dentist continues to see no OI-related issues with FangFang’s teeth, which is great news. And the dietician talked with me about our diet and what FangFang eats and what her growth trajectory looks like, and she was happy with all that we’re doing, so no changes needed there.

The physical therapist was also very pleased with what FangFang is doing and what we’re working on with our local physical therapist, which was great news! The occupational therapist recommended an OT evaluation and maybe 4-6 sessions of OT at home to work on underlying core strength and skills – grip strength, endurance, screwing and unscrewing. I’m not thrilled to add likely another appointment to our weekly routines, but it’s definitely a good idea to address these things as early as possible, so we’ll see what we can do!

Overall I was very encouraged by the clinic visit, knowing that the Pamidronate treatments are having the desired effect, that her bone density is increasing, and that we likely don’t need to return to Omaha until next year for clinic. That’s pretty much the best report we could hope for!

After clinic, Matt took the younger 3 kids back out to play at a park while Miranda and I stayed back at the hotel room. She did some math and some art while I put in a couple hours of work and then napped. Another consequence of that whole six people in one hotel room arrangement was that no one was getting great sleep!

Friday was a really good day. We’d planned to meet Xiao’s family at the zoo, just to hang out and have fun, and that we did! Another family in town for OI clinic joined us, as well, which was great! They’d traveled all the way from the Bahamas for clinic, making our 5-hour drive look like nothing! The kids loved running around and the zoo, and we’d heard great things about the it, and it did not disappoint.

It was great to have this time to consult with these amazing OI-care experts and so good to connect with other families with kiddos who have OI. We were so thankful for our time in Omaha!