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!

Summer School 2018 and Why We’re Schooling Year-Round

We finished up our 2017-2018 school year last week (blog post on that coming soon)…and so, obviously, the thing for us to do this week was to jump into our summer school routine!

In general, we’ve done school year-round, sometimes in different ways and for different reasons, but we’ve found it works really well for our family.

First, it allows for us to have a generally consistent structure to our days. Our kids don’t do well with extended periods of time of no structure. And, to be honest, really don’t do well with extended periods of time of no structure. We lighten things up over the summer, but we can keep our general structure pretty similar to what we do during the school year. The day starts with math and handwriting over breakfast, and then everyone gets a bit of play time before we tackle anything else, and we do some more work before and/or after lunch. The little kids are continuing to be exposed to the idea that they have some choice in what we read, but I get to read the books to them, and we all sit on the couch and read together for a period of time in the afternoon.

Second, it allows for us to continue to work on building skills that would otherwise stagnate or start to decline if ignored for months at a time. We’re continuing on with math, handwriting, reading, and Chinese, all areas in which I think it would be harder for my kids to jump back into their work in the fall if left alone all summer.

Third, we can pick up some study in areas in which I want to prepare more for the fall. We’ve jumped around a bit in terms of our Language Arts curriculum over the last couple years, and we’re going to try Sonlight again in the fall, and I think I need to work with my girls a bit on writing before we start that program. With the little kids, I want to work more on letter recognition over the summer.

Fourth, a lot of the rhythms of our lives just incorporate homeschooling. Matt and I usually read out loud to the big kids before bed, and a lot of the books we use are our Sonlight read-alouds. That’s part of the rhythm of our family life, not something we want to drop just because it’s summer time. Similarly, we’re attempting to cultivate a lifestyle, not a checklist. Yes, my kids are required to read every day…but we want them to read because they have a lifestyle of learning, not just because any given day is classified as a school day.

Fifth, schooling through the summer gives us so much more flexibility during the year. If we’ve continued on with even a portion of our school work during the summer, I don’t feel at all bad about taking days off to go to the park or visit friends and family during the school year, and our many doctor and PT appointments don’t throw off our school schedule. We can create a schedule that works best for us and includes a good deal of flexibility, because we’ve already done a lot of school work, even before the official school year starts.

Of course, we’re also spending a good deal of time just playing outside, going to the pool, and generally enjoying life and the blessings of summer! But summer school is also part of our family’s summer life, and I’m thankful we’ve gotten started on that 🙂

Families Belong Together

This morning, I packed up two of my kiddos and headed downtown for our local Families Belong Together march. (Matt and the big kids had a prior commitment, or they would have joined us, too.)

As an adoptive mother, I’ve spent a great deal of time in recent years researching trauma and its effects, both short and long term. All adoption is born out of loss and trauma, and in order to be the mother that my children need, I have to understand the implications of that fact. And, of course, that knowledge has also come into play as I’ve parented my first three children through the trauma of witnessing Matt’s heart attack and their subsequent unexpected separation from Matt and me during his hospitalization.

Most people will experience some form of trauma in their lifetimes. But that does not excuse the deliberate infliction of trauma on others, as the Trump administration’s immigration policy has done and is doing. Countless apolitical organizations, including the American Academy of Pediatrics, have spoken out against this policy and its traumatic effects. News articles are documenting shelters filled with “eerily quiet” toddlers. The only times in my life I’ve been inside buildings full of quiet children have been…when I visited orphanages. Can you imagine, a building full of hundreds of children…quiet? It’s because they learn that no one is coming for them. No matter how much they express their needs, those needs are not going to be met.

I know these things, and I live out, in my parenting journey, the reality of walking through life with children who have experienced separation from their parents and the horror of life in an institution. How can I stay silent, as our own government, in the United States of America, in 2018, enacts practices that separate thousands of children from their parents and caregivers, from their only sources of stability and safety and security in this world?

I won’t stay silent. I call my Senators and Representative. I post on social media. I make financial contributions to organizations doing good work. I pray. I vote. And I march.

approaching our Columbia march gathering place
the Columbia gathering in front of the courthouse
a sweet lady let FangFang and Atticus hold her signs – “Love not hate makes America Great!” and “Stop pretending your racism is patriotism”
sporting my Families Belong Together tank top, courtesy of my friend’s Six Sisters Custom Designs Shop
Marching. “I Really Do Care, Don’t U?”

A Busy May Full of Visits and Transitions

I took a few weeks off of blogging in May – it was a bit of a crazy month! My dad visited at the end of April, then my mom came for a visit.

Our Chinese teacher (who has become a friend) graduated and moved across the country to be with her husband.

We had an ER trip for FangFang when she flipped her wheelchair over on top of herself. She was, fortunately and miraculously, completely fine.

We’ve had FangFang enrolled in public school, receiving homebound services, but we had her last session and withdrew her from public school.

I spoke at our church’s women’s retreat, where we studied the book of James, super hard-hitting. I loved getting that time away with other women, having good conversations, connecting, and worshiping together. The camping atmosphere was…not my favorite 🙂 But we did have cabins with beds, and there was an actual bathroom, and I survived! And I learned a lot studying James 3 and 4 in preparation for my talk about our speech, about our hearts, about our recognition (or lack thereof) of God in the world, and about humility and wisdom – a lot to cover but some really good stuff.

FangFang also managed to fit in a trip to urgent care. She fell off of a picnic table at the park, earning a cut on her face that required 5 stitches.

We spent a day in St. Louis with my cousin Kevin and his family, which was a blast. We really enjoy Kevin and Rebecca, and they have a daughter, Sawyer, who is just a bit older than Miranda, so we all had a really fun time hanging out together.

Matt finished his semester and headed to Michigan for 6 days, at which point my mom came back for another visit to help out while he was gone. We might have survived without her, but it was definitely incredibly helpful to have her here, especially since no one slept well for most of that week! Atticus, in particular, is very attached to his routines, including Matt putting him to bed each night, and he was not always pleased to have me hanging out with him instead. And we got to have some fun outings – going to a pow wow and spending a bit of time at the pool.

Then our horseback riding instructor (who has also become a good friend) moved to the St. Louis area, and while we can keep in touch, we’ve said goodbye to having her as our regular instructor and seeing her quite as frequently.

And we switched Miranda from her regular swim club to summer swim league at our local pool. And it…did not go well. It was super crowded, including a lot of older kids, with more of a focus on racing against other kids during practice, as opposed to just improving yourself. It took only a couple days of misery before we switched her back to her regular swim team! I should have paid more attention to my own counsel, realizing that finding an activity that works well with a coach or instructor who is a good fit is hard to do – those good instructors are worth their weight in gold – and we should have just stuck with what was working. But we made it right, and even though we lost some money, and I felt like a bit of a flake, I’m glad we did it 🙂

Then we wrapped up the month with a visit from my aunt and uncle! We got to have dinner and hang out with them and give them a brief tour of the Mizzou campus and just enjoy having a bit of time together.

The month was full of so much good stuff – we loved having visitors and opportunities for connection.

But also? I hate change. Knowing it is coming makes me nervous, and I always mourn for what we are losing. If it were up to me, I’d very rarely choose those transitions. And I think that’s one reason why God put me in a college town, where change happens constantly, and I’d have to deal with it. I can’t hold anything in my life too tightly, and I’m forced to embrace change and newness.

I’m still mourning the losses, the unexpected injuries, the moving of friends, and all the transitions. But I’m looking forward with hope to what is to come.

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.

dinner table school

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.