Spring Break Excitement…Or Not

You may be wondering what a family of six that is saving money for a fun summer trip (as well as continuing to rebuild the emergency savings account that was wiped out with the last adoption!) chooses to do for spring break. It turns out…not much. Well, that’s not exactly true. We’ve been doing a lot – it’s just that none of it is particularly exciting.

In fact, with the exception of a blissful 36 hours in which everyone in our home was fever-free, we have had at least one sick child every day for the last 11 days. We’ve had runny noses, coughs, and fevers, and yesterday we added a confirmed ear infection to the litany of afflictions. The downside of having a lot of children is that illnesses can slowly make their way through them, one at a time, rendering at least portions of the family home-bound for long periods of time. We’re thankful it’s not worse, but this is getting pretty old!

In a way, it’s been nice that the weather has been so yucky – 40s, maybe 50, cloudy, rainy, and muddy. At least we haven’t felt like we’re missing out on much! Even though this week is Matt’s spring break, the kids and I are plugging away at school. We may as well do school now, when weather is yucky and everyone feels bad, so we have more time to enjoy the fun, warm, sunny days when they arrive.

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We also have a number of medical needs in our family, and poor Matt is at my mercy this week, as I’ve scheduled as many appointments and meetings as possible to try to avoid having to drag all 4 children to everything. So far we’ve tackled an eye doctor appointment for one child, a meeting about access to our church’s children’s programs for one of our kids, an unexpected pediatrician appointment to confirm the ear infection, a cardiology appointment for Matt, and we tried to do an endocrinology appointment for two of our kids…but, for the first time (which actually might be impressive, given the number of appointments we have? or maybe it’s still just depressing) I had the day wrong, and they told us our appointment is actually tomorrow. Sigh. Tonight I’ll meet with another adoptive mom to talk some adoption stuff, and tomorrow we’ll do the actual endocrinology appointment and hit a physical therapy appointment. It’s all stuff that needs to be done…but it’s not exactly Disneyworld 😉

I am thankful that we live in an era in which medical care is readily available. I’m thankful for our high quality health insurance that allows us to pursue that care without worry. It has not escaped my notice that not everyone has that right. My child who woke up with an ear infection doesn’t have to suffer longer than necessary. And since we need to take care of all of these specialist appointments, it is so nice to be able to do it during a week when Matt is around. This is part of what life with a medically complex child and others affected by various medical issues is all about. We knock out the appointments, do some school around them all, and try to get in some bits of family fun, as well <3

I hope your spring break is more exciting than ours – but also that if you are a family who has weeks like this, filled with a never-ending stream of appointments, that you can see the grace in the ability to do that, too.

2018 Goals

I spent a lot of time toward the end of 2017 thinking about what I wanted my goals for 2018 to be. 2017 was a crazy intense year. I’ve told a few people recently that I felt like I had about 800 balls in the air, and I dropped almost all of them at least once, and I’m slowly trying to pick up what is important. As we – hopefully – move toward a time of less necessary intensity, I’ve been wanting to be intentional about what my priorities and goals are, and I’ve come up with a few things.

  1. I want to try to cultivate peace and joy, both in my heart and in my home. First and foremost, I think this is a spiritual battle. I want to be more intentional about spending good time in my Bible and in prayer. I’ve started getting up earlier and doing a Beth Moore Bible study – just on my own – to help me stay in a pattern of doing that. Beyond that, I need to take some practical steps to enable peace and joy to flourish (like not over-committing myself to too many things). And I need to commit myself to examining my own heart throughout the day, practicing mindfulness and prayer and self-regulation, and I need to establish more patterns of treating every member of my family with respect, not yelling or expressing myself with sarcasm, even in my most frustrated moments. I think this is key to my growth as a person and as a wife and mom this year. 
  2. I want to rebuild our emergency savings fund. We basically wiped ourselves out financially to complete FangFang’s adoption at the end of 2016, and 2017 was such a crazy year with medical and travel expenses and just not having the mental or emotional energy to buckle down and commit to spending less money, so we pretty much just held steady financially. In 2018 we’d like to get back to a place of more financial security.
  3. I’d like to read 12 non-fiction books. I’ve been doing really well with keeping up with and enjoying some good fiction books lately. I read them on the Kindle app on my phone, which allows me to spend 2 minutes here or 5 minutes there reading as I’m able, which I so enjoy. But with non-fiction, I find that I am more thoughtful about what I’m reading if I read it in a paper copy, not a Kindle book, and I want to devote time and mental energy toward really integrating what I’m reading into my mind. That means I can’t just read it anywhere and everywhere and in 2-minute increments. But I am, at heart, a student and an intellectual. Matt and I are dorky people – it’s one reason we love homeschooling so much. I find that I feel more myself when I’m engaging with ideas, when I’m growing and learning. I want to make that a priority, reading and thinking on my own, and to that end, I’m making a goal of reading approximately 1 non-fiction book per month in 2018. And oh my goodness, I cannot wait to dig into this pile of books. I’ve started the first already, and it has been such an encouragement to my soul. 
  4. I’d like to get healthier. Exercise was sporadic, at best, for me in 2017, and I think my body feels the effects of that. And as I’ve gotten older, I’ve noticed that my metabolism isn’t what it used to be, and I’m needing to adjust to that. We remain committed to our pescetarian lifestyle and try to follow a fairly healthy, whole-foods, plant-based diet, but I think toward the end of the year, our meals tended more toward whole wheat carbohydrates and less toward vegetables, and I’d like to flip that around again. I’d also like to get a healthier amount of sleep – always a challenge with young kids 🙂 Overall, I’d just like to make progress toward being healthier.

Those are my top 4 personal goals for 2018. I’ll try to keep you posted here about how I’m doing in working on those, and I’d love to hear what your 2018 goals are!

Bookends to Our Travels: A Night and a Day in Chicagoland

It has been a little over 10 years since Matt moved to Missouri from Chicagoland and almost 10 years since I made the same move. We’re content where we are – but still – my heart longs for Chicago. I love this city.

We headed north to celebrate Christmas this year, and while most of our time was spent in Wisconsin with family, Matt and I were able to make 2 trips down to Chicagoland, one at the beginning of our trip and one at the end.

Every year my office has a holiday party, and most of the time, it would be nearly impossible for us to attend, but this year we thought it could work! My mom agreed to watch our kids, so Matt and I headed down to the city for the party.

Even traffic in Chicago is romantic to me. You feel like you’re part of a huge monolith, something greater than yourself, pushing on toward progress. You can watch the city skyline, not knowing the story of each person in the cars or trains around you, but knowing that you are all part of this grand city together.

Eventually we made it to the party, which was so much fun! We had a private party at Bespoke Cuisine, where we worked together (with actual chefs) to create an appetizer, a salad, a main dish, and a dessert, all of which were exquisite, for our dinner. Many of the employees with my company have joined in the years since we’ve moved away from Chicagoland, so I don’t know them well, but I’ve known some of my colleagues for years and years, and it was such a joy to get to spend a few hours catching up with them in person!

I’m so thankful for the ways in which my job has flexed with our life over the years, and it has been a huge part of facilitating everything we are passionate about. It was really nice to get to spend some time with these people who have been a huge part of our lives for nearly 15 years!

The next time we went to Chicagoland, we brought the whole crew! One of Matt’s and my favorite places in Chicago is the Field Museum. We knew that with our kids’ current fascination with dinosaurs, they would be ecstatic about the opportunity to see Sue the Tyrannosaurus rex. Given our flexible travel schedule this trip and the fact that Sue will soon be taken down, not to appear in her new location in the museum until 2019, we thought this would be the perfect time to make the trip.

All of the kids were suitably impressed 🙂

As a homeschooling mom, I could not love stuff like this any more. We’re exploring the kids’ interests and passions and all learning together. SO COOL.

We did see some of the other collections (notably the Egyptian area), but we spent most of our time in the rest of the dinosaur exhibits 🙂

It was an expensive day, but we place a high value on experiences like this one. We love to spend time together, and we love to learn and to provide our kids with the opportunity to explore, in person, topics they’ve been reading about. They had many thoughts about dinosaur sizes and strength and time periods and other details they were learning about as we were making our way through the exhibits. It was an amazing day of exploring and learning together, and we were so, so glad we took advantage of the opportunity to make it happen!

And on our way back up to Wisconsin, we got to drive along my favorite Chicago route, Lakeshore Drive, and stop and see some good, long-time friends!

I’m so thankful for that day and thankful it all came together! It was nourishing to my soul to be able to spend some time in our old city this trip.

Moving Toward Normal

Matt went back to work last week, so while we’re still settling into life and working toward our new “normal,” this was a big step toward that normal. It was an intimidating one! When we came home with FangFang, going from being home with 3 kids by myself a lot of the time to having both Matt and me home with 4 kids felt pretty manageable; I was not sure that transitioning to a lot of time of me being home with 4 kids by myself was going to be the same!

Honestly, overall, it has gone better than I expected!

The hardest part has been the toddler naps (or lack thereof). Matt had been putting the littles down for their naps, and they’d gotten used to that, apparently to the extent that my presence is now a significantly distracting novelty. Last Monday neither little one napped. Tuesday only one napped. But Wednesday and Thursday both napped, and it was glorious! I could work! There was a break for me in the middle of the day. It was so nice. No naps on Friday. Monday of this week both littles napped (but only after a combined 2 hours or so of effort from me), and Tuesday neither napped. That has been incredibly frustrating – not only do I not get to work or get any calm, quiet time during the afternoon, but I spend 60-90 minutes trying to get the littles to do something they’re not going to do, and that’s time I don’t get to spend doing anything else productive, and they don’t nap anyway. Then we’re all grumpy for the rest of the afternoon. I’m really not ready for them to give up naps – but whether I’m ready for it or not, I’m not sure they’ll keep napping regularly for very long. I need to come up with a different strategy for getting in my work hours, and I think I may need a different nap-encouragement strategy, as well. I’ve gotten some advice, and I’m working on it. In the meantime, this is an area in which we could use prayers – for patience, gentleness, and sleep.

We’ve been able to do school every day, which has been really encouraging to me. We’re figuring out what works and what doesn’t. Being intentional about getting out some good toys for the littles makes a huge difference. Often times, trying to do everything in the morning does not work; but neither does saving the most intense stuff for the afternoon. We need to start with math right away and get through it before we move on to anything else. And while the bigs are doing math, I can often read to the littles and get in a little bit of quality time with them before I need to devote my focus to the bigs again. Once math is wrapped up, I give all the kids a little bit of time to play. Then we do Language Arts and “reading school” – Bible, history, geography, and the girls reading out loud. If everyone’s stamina is holding up, we can sometimes get in science, too, but it often works better to leave that for after the littles’ naps. We’re making our way through the curriculum at a pretty good pace, and while I would have loved to have gotten more done before we went to China, I’m generally pretty happy with where we’re at right now and how we’re able to move through it even with everyone home.

science experiment time!
science experiment time!

I’m working on the balancing act of my own household responsibilities and investing in the kiddos beyond school time. Miranda really enjoys games like Backgammon and “the dice game,” a simplified version of Yahtzee that she’d been playing with my dad. Madeleine CaiQun loves reading and snuggling. Both littles are very into almost anything I’ll do with them – building towers and toppling them and snuggling and reading together. Everyone loves it when we pretend they are airplanes and I fly them around. I’m trying to make time for those things.

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At the same time, though, I need to pay bills and keep up with dishes and laundry. Friends from church had been bringing dinners for us a few times a week through last week, which was so helpful, but I’m now back to planning and preparing all of our food. I’m incredibly thankful for all of the meals I prepared and froze last summer and fall – those are going to sustain us through much of this semester, I expect. Matt has also been helping out with all of the necessary household stuff in the evenings.

And in the midst of it all, we’re tackling appointments and evaluations. In the space of 11 days, we’ve had or will have 11 different appointments, procedures, or evaluations – not all for FangFang but many of them for her.

The big girls are convinced that while we're waiting for PT to start, they should be helping FangFang learn to crawl.
The big girls are convinced that while we’re waiting for PT to start, they should be helping FangFang learn to crawl.

I’ve also spent hours filling out paperwork and talking with intake coordinators for various programs and checking items off of our running to-do list with the nurse at our pediatrician’s office. Friends have been kind enough to help out with our kiddos, which I so appreciate, so that I’m not dragging 4 kids with me to every single appointment or procedure. A pretty quick x-ray appointment? We all go. It’s just part of life. However, today’s CT scan for which sedation is required and I need to be able to focus on a 3-year-old who derives major comfort from food and is not allowed to eat for hours before the procedure and whose sedation recovery I’ve never experienced before? I’d like to tackle that one without another 3 kids in tow, thankyouverymuch!

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with all 4 kiddos in the x-ray waiting room

I did leave the house by myself with all 4 kids multiple times last week, an accomplishment of which I was immensely proud! It requires a little bit of planning, but it feels pretty manageable, so I’m thankful for that.

I don’t feel like we’re in any sort of normal rhythm yet. I think we’re tackling everything we need to do in order to move toward that, though, and I have hope that we’ll get there. Of course, we may get there just in time for the end of Matt’s semester, which changes everything again, or for a femur rodding surgery, which will change everything, too, or – please, no! – a femur fracture, which would also change everything, but we’ll work through all of that as it happens. We just keep moving forward, taking one step at a time, and moving toward the goals we hope to reach.

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!