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 🙂

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.

Telling My Kids Their Stories

All four of my children love to hear stories about themselves – particularly when those stories are relayed with joy and laughter. We all love the story about Atticus making pee dinosaurs on the couch (though we try not to tell it too often when he is around, for fear of encouraging future artistic endeavors of this sort!). We all find it hilarious that when I took the girls to our Mandarin teacher’s baby shower, FangFang was so excited to interact with other Chinese people that she approached all of them, saying, “Ni hao ma?” (“How are you?”)…but not being exactly fluent in Mandarin anymore, she had no idea what any of them were saying and followed up their responses with another enthusiastic, “Ni hao ma?” Miranda likes to hear about how, when we were traveling to China to adopt Madeleine CaiQun, as our airplane for our international flight taxied away from the gate in Detroit, she announced, “We’re almost to China!” We all laugh about how Matt used to pull Madeleine CaiQun’s pants up super high every time he changed her diaper, and she’d run back into the room, filled with glee, announcing to Miranda and me, “What Baba do?!?!”

(no super high pants – but I just couldn’t resist including a photo of my precious little Madeleine CaiQun from those early days home!)

Those stories are adorable and fun, but each of my children have deeper stories, the narrative arcs of their lives. For my two biological children, not only do they have big picture stories, but they have frequent photos, preserved “coming home from the hospital” outfits, favorite baby toys, and our recollections of their everyday moments. For my adopted children, it’s a bit different. In both of their cases, until they reached about 2 years old, I really have just a few pieces of paper and a couple photos for each of them. I can’t tell them what they smelled like as I snuggled their tiny newborn bodies against me, and I can’t tell them what their first foods or favorite toys were. And that makes the information and the photographs that we do have that much more precious. Those details are sacred.

FangFang asks with regularity, “Mom, you tell me my whole story?” And I walk her through it, in broad 4-year-old terms, from day one of her life until now, telling her what we know of her life. She delights in that and loves to hear it all, again and again. When I leave out details, she asks about those – “Mom, you tell me about the bed where I sleep when we were in China?” Some of the interest in hearing her story is, I expect, about seeking reassurance that we are permanent, and some of it is a straightforward desire to know and hear her own story.

And this week, Madeleine CaiQun asked, in a quiet moment, if I would tell her her whole story. “Not with everyone, though. Just you and me and Miranda. Is it my choice who I want to hear my story?”

“Yes, it is your story, and it is always your choice who you want to share it with.”

And so, as God would have it, my mom has been visiting this week, so I was able to leave the little kids downstairs, so I could sit upstairs with just Madeleine CaiQun and pull out that special folder, containing all of the documents I have about my precious girl’s first years. I got out her referral file folder, as well as the other sparse documents and photos we have from her life before us, and she and I sat together, just the two of us, and looked through them all. I read to her the description of her that the orphanage submitted with her file, all the details of her finding spot and what the orphanage officials shared about their impressions of her, what they wrote about the special need with which they had labelled her.

She has, of course, known her story from the beginning of her days with us. We’ve continually sketched out for her a developmentally appropriate outline of it. But this week was the first time we’d put all the pieces entirely together and spelled it all out for her precisely. And it was good. She needs to know, and she deserves to know, and, at almost 8, she’s ready for the details.

After we looked through the artifacts of her history, she and I snuggled in bed with Miranda joining us, too, and she asked me to tell her the whole story of what we know of her life and her coming into our family, from beginning to end, and I did.

She had some questions, as we talked about the particulars, and I answered them as accurately and as kindly as I could. She deserves those gentle, honest answers, and she deserves to have them from me. Her story is hers, and even I do not own its details. It is hers to know and to share as she chooses.

I expect that Matt and I will continue to talk through our girls’ stories with them in the years to come. We are all continually making sense of who we are and from where we came, and adoption adds another layer of complexity to that investigation. I’m proud to walk with my girls on their journeys and hope that I can honor them and their stories now and in the years to come.

Note: As my kids are getting older, we have increasing discussions about their comfort level with information and stories I share on my blog, and Madeleine CaiQun has authorized the sharing of this blog post.

Dream Homes

One evening, as I was scrolling through Facebook, I saw an ad for a house listing. The home looked beautiful – older, 3 stories, brick, and a nice yard. The interior reflected wonderfully done updates. And of course its price is approximately five times the value of our home! There’s no way we’d ever be able to purchase it, but I told Matt and the kids that something like that might be my dream home.

That led to a conversation with the big girls about what their dream homes would be. I treasure those moments – the fun discussions, just learning more about where each child’s heart is and what they would create if they had no constraints. I want to remember more of these sweet conversations, these treasures of children growing older, and so I’m recording this one here as a witness, to look back upon with joy in future years, as well.

This is how Miranda describes her dream house:

It would be a purple castle with 4 large triangular peaks and windows. There would be a ton of windows surrounding so we could see if an enemy was trying to come. There are always lovely dinners served of paprika and for dessert always cupcakes and peep cake. It would have 6 bathrooms with 6 mirrors, one for each person at their appropriate height, 2 sinks, 1 for boys, 1 girls in each bathroom, and 2 shiny purple bathtubs. At the gate there are pink and golden bars, and there is a big pink drawbridge over a big moat filled with peeps that are rainbow colored and pink and white – each peep is a rabbit. The courtyard has a ton of Hatchimals – about 1,000 – and birds and plenty of trees for them to nest in. There are 6 bedrooms. One is purple with a king size and queen size bed for Mommy & Daddy (the beds are connected). One is a blue room with dinosaur and panda wallpaper with small bed with panda blanket and pillows and king size bed with dinosaur blankets and pillows for FangFang and Atticus. One is a rainbow room with pink and white added, too, and My Little Ponies painted all over the wall with bunk beds with My Little Pony sheets and pillows for MeiMei and me. The other 3 bedrooms are for guests. They’re green, blue, and red. There are king size beds in the red room and blue room and a queen size bed in green room. There is also a big living room that is always kept clean with a big pink and purple striped rug, 1 big purple couch and big purple chair for Dad and 10 pillows on the couches (5 each). The other couch is pink. There are 3 pink pillows and 2 purple on the pink couch and 3 purple pillows and 2 pink on the purple couch. There is also a dining room, and there is a kitchen where all the beautiful and wonderful foods are made. There is a playroom with tons of toys – panda toys, peep toys, Hatchimals, My Little Ponies,  and dinosaurs. There are also royal cats – a father, a mother, and 8 kittens. Four kittens are black boys like their father, and 4 are calico girls like their mother.  There are also horses – 1 that can use magic (a unicorn), 1 that can fly (a Pegasus), an alacorn that can use magic and fly, and a “rainbow colored horse that is just normal.” There is a royal sunroom where the cats can go to play, and it’s warm enough for them to use it every single day. There is a royal throne room with 2 gigantic thrones for Mom and Dad, 2 medium thrones on either side for MeiMei and me, beside those are 2 small thrones for FangFang and Atticus. There are tons of paintings all over the castle of pet horses and cats and such other things you might think of like wonderful desserts and meals. And the last room is half a royal nursery and half an eye examining place to see if anyone needs glasses.

Madeleine CaiQun describes her dream home this way:

It is a light pink castle with a light pink wall and a moat and a drawbridge and flowers on the castle wall. The bathroom would have a pretty pink bathtub and mirrors, each at appropriate heights for people to see themselves and a sink for each of the people at their perfect height. There would be 3 bedrooms. One has a big bed with pink sheets for Mommy and Daddy. One is blue and has dinosaur wallpaper and a crib with pandas all over it and a blanket with a big panda face, and the bed has dinosaur pillows and dinosaur blankets. One is purple with 1 huge bed for 2 people with My Little Pony wallpaper and 2 dressers. The bed has My Little Pony sheets and pillows and blankets. The living room has cat wallpaper and couches with cats on them and pink carpet. There is a playroom with My Little Pony wallpaper and pink carpet and shelves with toys. Some toys are My Little Ponies, some are pandas, and some are dinosaurs. For pets, there are 3 cats – one kitten, one mother, one father. There are also a unicorn and Pegasus and an alacorn (unicorn with wings) and a few normal horses whose colors are brown and a rainbow mane with white body. The flowers are pretty – pink, purple, and all the other colors of the rainbow. The wall of the castle has a gate with golden bars.

I love hearing what my kiddos come up with and share, given the opportunity!