Refresh Chicago 2017

About 2 weeks ago, I embarked upon what I believe was my first weekend getaway without husband or children in my nearly 7.5 years of motherhood – and it was glorious.

Don’t get me wrong – I love my family deeply, and had I yearned for weekends away prior to this point, there would have been ways to make it work. Last spring, I heard about the Refresh Chicago conference, and it sounded like some of the other adoptive moms with whom I’ve connected on Facebook were going to make the trip, and I mentioned it to Matt, who announced that I should make it happen. I went ahead and registered, and I convinced one of my best friends, Marisa – who is now just weeks away from becoming an adoptive mom herself! – that she should come with me.

I wasn’t exactly sure until recently exactly how I’d handle the travel details, but I need to give a huge shout-out to Chosen and Dearly Loved for truly facilitating that part of my trip to the conference. They blessed us with a matching grant when we were in process to adopt FangFang, and they reached out to their families this summer to ask if people were interested in going to this conference and offer grants to help make that happen. They paid for a huge portion of my costs of attending the conference. To my knowledge, they are the only grant organization that offers post-placement support, in addition to support during the adoption process, and that is such a huge need, that I am really thrilled to see them stepping into.

Because of that, I was able to fly to the conference without worrying about the cost, and that made it so much easier than having to negotiate the logistics of train or megabus or rental car travel. Plus I arrived in time to have tea with one of my good friends from our Chicagoland days! It was so nice to get that little bit of time to connect with her again in person. Then the rest of the trip was pretty packed with conference activities and adoptive mom hangouts!

The conference itself was great. We began Friday morning with worship, and one moment struck me and has stayed with me. There’s a line in one of the songs we sang – “and darkness tries to hide, and trembles at His voice” that was so humbling to sing in a room filled with adoptive and foster parents – because we have seen the darkness. And I want to believe with my whole heart that the darkness out there in the world today that has come into play in separating our children from their first families and in so many of the realities of their lives is truly trembling at the voice of the living God.

There was also incredible teaching. Kristin Berry is a phenomenal story-teller and encourager. Cindy Lee of the Halo Project OKC is an amazing resource for casting vision for healing from trauma and for practical guidance in how to parent kids from hard places – I’ve appreciated what she has to say every time I’ve heard her speak. I loved getting to hear from Kia Barton, now an adult adoptee, about her experience growing up as a black child with white parents. This was the first time I’d heard Paris Goodyear-Brown speak, and I was highly impressed with her deep understanding of the adversity that children who have experienced trauma can face and how to walk with them through their challenges. I was so encouraged by these reminders of how I can walk alongside my children and love them well.

In addition to the actual content of the conference, it was so encouraging to be surrounded by a group of people who get it. Wanting to be intentional about facilitating those connections and that sense of connection, in our welcome packets, the conference organizers even handed out “me too” signs that we could raise when what other people were sharing resonated with our stories.

Within this context, there was so much background that didn’t need to be explained, so many premises that didn’t need to be established. These people understand the difference between chronological age, developmental age, and family age. They understand the desire to seek for our children racial mirrors and connections to their birth cultures. They understand the tension inherent in telling our own stories and advocating for adoption while keeping our children’s stories private. They have lived the long-term realities of the lasting effects of food insecurity. They grapple with the fight for ethics in adoption. They understand what dysregulation is. They understand sensory needs. They have fought for attachment, both for their children to feel bonded to them and for them to feel bonded to their children. They don’t blink at stories of 3 hour rages; or piles of junk food wrappers found under beds; or seemingly compulsive lying, cheating, and stealing; or alternative high school placements; or police involvement with families. They understand complex developmental trauma and how it can manifest and what it looks like to parent children who have lived through that.

There is such encouragement from being surrounded by people who are walking this journey of adoption and foster parenting, too. One of the biggest blessings of the conference, for me, was getting to spend the weekend with these ladies. Thank you, Kathy, Marisa, Diane, and Becky for hanging out with me!

I actually came home feeling a bit sick, but I enjoyed the opportunity to spend some time snuggling my babies.

We’ve had a lot of dysregulation since my return, and that has been challenging, but I find myself more patient and better equipped with strategies to walk through all of that with my kiddos. It was definitely a great conference and a great trip overall. Would you join me next year?!

What do you think about adopting out of birth order? What about virtual twinning?

For those of you not part of the adoption community, these may seem like strange questions. But as someone who has been a part of the adoption community for 6+ years, of which about 4.5 have been as an adoptive parent, I have heard these questions asked, in one form or another, multiple times a week for years. And as an adoptive parent who has both adopted out of birth order and virtually twinned children, I feel qualified to be a voice speaking to both questions. Obviously specific counsel varies depending on individual situations, but this post should be taken as a collection of general guidelines.

First, some definitions. Adopting out of birth order is adding a child to your family who will not enter your family as the youngest. Displacing your oldest child is a particular form of adopting out of birth order in which the child who is joining your family will enter as the oldest child. Virtual twinning (also called artificial twinning) is adopting a child where there will be an age difference of less than 9 months between that child and another child in your family.

(from left to right, Atticus (whose birth order we disrupted by bringing home a sister older than he was); FangFang (the sister who is older than he is but joined our family after he did); Madeleine CaiQun (who is only about 4 months younger than our oldest and is thus her virtual twin); and Miranda (our oldest))

Second, I’d make this recommendation to all adopting families, but, in particular, if you are considering adopting out of birth order or virtual twinning, I think this counsel is important – please look for a well-recommended, experienced, wise social worker. A good social worker is worth more than their weight in gold. They’ve seen many, many adoptions. They have a lot of experience from which to draw and a lot of wisdom to offer. They are also, yes, tasked with evaluating whether a family meets the qualifications required to adopt from a certain program and what age(s) and gender(s) of child would be wise for that family to adopt, as well as what special needs that family is prepared to handle. Both when we virtual twinned and when we adopted out of birth order, our social worker was on board with us doing so. She has years of experience working with adoptive families, she’s seen a lot, and she knows our family well. We know she is there to support our family and to help everyone thrive, and we very much value her opinion. If she had not thought it was wise for us to pursue either situation, we would not have pushed her to approve us to do so. She has never thought it would be wise for us to adopt a child older than our oldest and has never approved us to do so – and we agree that to do so would be extremely unwise for us!

Conventional wisdom from social workers and experienced adoptive families has generally been that out of birth order adoptions should be undertaken rarely and with great thoughtfulness, particularly if a family is displacing their oldest child (which is very, very rarely recommended). The same goes for virtual twinning. Adoption is hard. Children who are being adopted have, without exception, experienced trauma, and that trauma is going to manifest itself somehow, and adoptive parents need to be prepared and parent well, often using a more limited range of strategies than those generally considered to be acceptable for parents in our society. Adopting out of birth order or virtual twinning adds additional variables and challenges to an already challenging situation. The immediate challenges may be any or all of the following, plus more:

  • Abuse (physical, sexual, verbal, etc) from a new child, who may have been exposed to absolutely anything in their former environment and now enters a family as not the smallest, weakest person.
  • Attachment difficulties, stemming in particular from 2 major concerns:
    • If there is abuse, it is hard for everyone to bond – the younger child being abused, the parents witnessing their baby being abused, and the new child, who is constantly tempted to lash out at their smaller (or same size) siblings.
    • If you bring in a new child as your youngest child, everyone understands that that child needs to be the “baby” of the family and should be treated as such. Bringing in a child who is not the youngest creates behavioral expectations for that child, that they be as mature as other children in your family and that they make room for babying a (likely regressing, due to the major change and potentially their own lack of understanding) younger child, as well.
  • Complex emotions on the part of children who may feel replaced by an older or similar-age child, moreso than they would by a baby.
  • Competition between similar age and/or similar developmental stage children.

Additionally, displacing an oldest child would set up difficulties in which the former oldest child (likely a child who, based on studies of birth order, likes to be a leader, likes to know what to expect, likes to be in control) is no longer the oldest child, and yet, they may remain the most mature child. The new child may refuse to follow the “lead” of the younger child in learning appropriate family behavior and instead may try to take the lead in promoting unsafe or inappropriate behaviors among all the children in the home. The now younger child may not appreciate having an older sibling who is less mature than they are. This can create tremendous tension. As an added concern, displacing an oldest child means that parents are now parenting a child who is at an age at which they have never parented a child before. It’s hard enough to figure out parenting, let alone adoption parenting, not to mention adoption parenting of a child who is years beyond any other child you have parented before.

As I said, despite all of these additional challenges, we’ve chosen both to virtual twin and to adopt out of birth order. So why did we do it?

With our first adoption, our daughter Miranda was almost 3, and we brought home a 2.5-year-old daughter, Madeleine CaiQun. Although only about 4 months apart in age, the two would be on either side of our school district’s age cut-off date for entering kindergarten, meaning that if we did choose to enroll them in public school, they’d be in different grades, and for social activities based on children’s grades, they’d be in different groups. We felt that would cut down on competition. We also knew that Madeleine CaiQun was significantly behind developmentally, so we figured that the girls wouldn’t really be competing with each other. We’d view Miranda as the older child and Madeleine CaiQun as the younger, and even though their technical birthdays were close together, we’d still create a pretty firm birth order.

(me with my virtual twins, together in China, 2013)

For the most part, that has played out well for us, and I really don’t think we hit most of those initial challenges I mentioned above. However, what I think we under-prepared for were the challenges we are facing now, 4.5 years later, as the girls are preparing to start 1st and 2nd grades, and there are many ways in which there is not such a firm-seeming “birth order.” Based on our experience (and those experiences of other families we know who are a similar length of time into the process), I’d encourage families to consider the following:

  • How will you handle it if your child at home is more advanced than your new child across the board?
  • What happens if the “younger” child or child who joined the family later, actually is better than the “older” child in certain areas? How will the older child feel about having a younger sibling who is more advanced than they are?
  • How will you avoid constant comparison of your children? How will you interact with other adults in your children’s lives, who may have a tendency to compare them? What about other children making comparisons?
  • How will you navigate social situations? What if one child is more social than the other? What if the two enjoy being together but invitations are not always issued to both children? What if the two don’t enjoy being together?
  • How will you navigate extra-curricular activities? The kids do the same activities (convenient, but it’s a lot of time together and can lead to competition)? Different activities (gives kids some space but is a lot less convenient)? What about the social implications of whatever choice you make with regards to those extra-curricular activities?

(my virtual twins together, 2016)

In terms of adopting out of birth order, we avoided some of the challenges by virtue of who our children are. We knew that FangFang, though 14 months older than Atticus, would be significantly smaller than he would be and definitely behind him in terms of gross motor skill development – she wasn’t going to be bullying him. Additionally, because of her needs, we’d have to “baby” her in a lot of ways, often carrying her and assisting her in other ways. Also, Atticus, as a third child, was quite used to the reality that the world did not revolve around him, and because we also had other families and kids in and out of our house frequently (even caring part-time for a friend’s little boy close in age to Atticus), he was used to sharing us with other kids. We also knew that Matt’s flexible schedule would allow him to be helpful with any challenges that did arise once FangFang came home.

Even so, it was a difficult transition for him. I’m not sure it would have been significantly less difficult had we brought home a younger toddler, but the reality is that it was hard on him. There were many instances those first weeks after I arrived home in which either Matt or I had to be fully engaged with Atticus for a period of time while the other cared for the other three kids.

(my two littles with me, soon after I returned home from China with FangFang – if one was sitting with me, the other also had to be there, December 2016)

Again, based on our experience, but also the experiences of others whom we know who have adopted out of birth order, I’d encourage families considering adopting out of birth order to consider these questions:

  • What will you do if your new child attempts to bully your younger child? How will you keep your younger child safe? Are you willing and able to keep your new child with you – as in, within your line of sight – at absolutely all times?
  • How will you facilitate bonding between a new child and the younger child they are bullying, between the new child and any older siblings who don’t appreciate seeing their youngest sibling be a target for this new child, and between you as parents and this new child?
  • How will you give your new child the babying they need to attach to you as parents, while also caring for your other, particularly younger, child(ren)?
  • How will you care for your younger child(ren), who will probably be stressed out by the addition of this newest child, and so will probably be regressing? Can you baby both your new child and your younger child(ren), all at the same time? What resources do you have to do so?
  • If your children are not bonding well and require constant supervision, do you have other people in your life who can provide the intense care that they need? If not, how will your marriage handle not being able to get away for time without kids?
  • Assuming your new child comes home with some special needs, you will likely now need to spend significant time at doctor appointments, in the hospital, at therapy appointments, and/or on the phone coordinating all of these needs, etc.; how will your other children, particularly any younger children, who are less able to understand the reason for all of this time away, handle this? How will you equip them to handle it well?

(the littles playing on “boats” together, July 2017)

Additionally, for anyone considering pursuing an out-of-birth order or virtual twinning adoption, I’d encourage you to be honest as you consider, are you pursuing this child because you truly believe that is what’s best for this child and for your existing family, OR are you pursuing adopting this older, harder-to-place child because then you don’t have to wait as long for a match?

In general, I think it’s good for families to be aware of guidelines that adoption professionals use as “best practices” and that experienced families consider to be wise. As many of us BTDT parents say over and over again in discussions within the adoption community, if you are proceeding with adopting, there are many unknowns. Think about what the worst case scenario is. If you’re not prepared for that, don’t proceed. There are many success stories of families adopting out of birth order and virtual twinning – and, honestly, the people with those stories are more likely to stick around as part of the Facebook groups and the resource lists for people preparing to adopt. But just because someone else’s experience went well does not mean that yours will, and if you can’t handle a harder version of what your potential future reality could be, it would be wise not to proceed.

I’d also recommend checking out this blog post, written by another adoptive mom who has been around for a while, in which she shares some wisdom and links to many other resources for people to read and think about as they consider proceeding with either of these scenarios.

And if you have any questions or want to talk more, please don’t hesitate to get in touch with me. You’ll notice that I shared very few details about our specific challenges and adjustments, which is purposeful on my part – I don’t think my children’s challenges should be google-able – but I’m happy to talk with you about your specific situation and offer more info that might be helpful about challenges we’ve faced (or have seen play out for others) in private interactions 🙂

a week of anniversaries

In a way that I’d never have predicted, the middle week of February has become one of great significance in our family’s story.

This Tuesday was the one-year anniversary of the shocking death of Matt’s older sister, Denya. Her daughters, in a gesture of which she would have been proud, chose to celebrate her life this week by asking Facebook friends to share their happy memories of her. It was fun to read of her love and laughter as experienced by other friends and family, too, but we definitely miss her. I miss her always encouraging Facebook and blog comments, her support for every new venture we pursued, her wise parenting advise, and, of course, the times spent hanging out together in her kitchen, enjoying and chatting about life together.

Yesterday was actually the one-year anniversary of our receiving pre-approval (PA) to adopt FangFang. We didn’t post about it far and wide on Facebook or anywhere else at that time – largely because we were en route to New York for Denya’s funeral, and we hadn’t yet told all of our close friends and family about our pursuit of adopting her. But still, as we drove on, snow-covered roads bringing us ever closer to the reality of the loss of our sister and friend, we celebrated the news that a new life would be joining our family, a precious girl we knew primarily through these pictures.

Our next milestone is today – the one year anniversary of Matt’s heart attack. One year ago today, after attending the calling hours for Denya, we were all resting in our hotel room when Matt suffered a sudden cardiac arrest. With our children looking on, I called 9-1-1, and our reality quickly transitioned from this

to this.

Matt’s heart attack has been a defining moment in our lives, one that, like having our first child, divides all of time into “before” and “after.”

Post heart-attack life is different than pre-heart-attack life. We have a radically different diet, eating almost exclusively low-sodium, plant-centered, pescetarian foods. Exercise is no longer viewed as a luxury to be pursued “once things settle down” but as a necessity, essential to sustaining life. We’ve become convinced that we cannot allow others’ desires to govern our lives – saying “no” has life-giving power. And beyond the practical changes we have made, we see life differently. Our default assumption is no longer that we are virtually guaranteed to have long, healthy lives together. The statistics for survival after cardiac arrest are sobering. My hope and prayer is that Matt and I will have many more years together – and I dream of what our future may look like – but we can no longer pretend that death is a far away specter of which we need only think once we are retired empty-nesters. Matt shared some of his thoughts on this day and that reality here. And the truth is that it is a source of some anxiety for me. We’re doing all we can to live healthily, though – and that’s all we can do. Beyond that, the calls for us are the same as those for anyone else – we seek to act justly, to love mercy, and to walk humbly with our God. We fumble toward one another, seeking to love and care for each other well, to honor our marriage vows. We pursue growth as parents and do what we can to encourage and pray for our kiddos to grow into thoughtful adults who will pursue God, be thoughtful and understanding, and fight for what’s right in the world around them. We look for ways to engage with the community and the world around us.

Life this week, while in many ways haunted by these anniversaries, has, for the most part, been simply normal. We’ve read books, learned about math, coached kids through resolvoing squabbles, played outside, eaten meals, done laundry and dishes, and relaxed with an episode of the West Wing or a game of Yahtzee after the kids have gone to bed.

And we look forward to the last of this week’s anniversaries. Tomorrow 4 years will have passed since the day Madeleine CaiQun joined our family.

This sweet girl has brought so much joy to our family – so many snuggles, so many good conversations, so much laughter. And so tomorrow we will eat Chinese food – noodles and dumplings, in honor of her province and the foods she loves so much – and celebrate.

This week is such a strange mix of reminders of life and death, of mourning and celebrations. We press on and pray that we can act honorably in the midst of it all.

FAQ: Home Almost Six Weeks! How’s FangFang adjusting? How are you?

At times it feels longer and at times shorter, but we’ve now been home with FangFang for almost 6 whole weeks! Some of the questions I get most frequently these days, in my few interactions with people who are not medical professionals or grocery store employees, are about the big picture of her adjustment and ours.

Attachment and bonding are always processes, processes with many variables and unknowns, processes best examined in retrospect. However, they are of such paramount importance for adoptive families that we adoptive parents are constantly on high alert, watching for indicators of progress (or lack thereof). We wonder to what degree our children are really getting it, that this is what family is; we wonder if they are really beginning to trust us; we wonder to what degree to indulge and to what degree to push; we wonder if we’re making the right decisions for our new children and for our families as a whole.

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You may remember that FangFang did not exactly appreciate my presence or attempts at caring for her in China. Having spent our time in China telling myself just to stay calm and positive and keep pursuing her in love regardless of what she did, I’ve needed to make sure I have been doing things to cultivate the warm, fuzzy love feelings for both of us. I’ll sometimes wrap her up in a blanket and rock her back and forth and look into her eyes, taking advantage of the oxytocin bump for us both. I’ll hold her on my lap while I read out loud or offer a hug or a kiss or a smile as we pass by each other. I try to take advantage of those 3-minute lulls in activity to do something relationship-building with her (and the other kiddos). We’ve incorporated more loving rituals into our lives as a family as a whole to build connections between all of us; for instance, before we begin our “reading school” time each day, the kids and I all sing the “Twinkle Twinkle Little Star, What a Wonderful Child You Are” song together. And as our time as a family of six grows, the love between us all is growing, too.

FangFang had actually decided pretty quickly after we left Sharon and Daniel that I was her person now, and that has been consistent, for which I’m thankful! The Ergo or Tula carriers, which she despised in China? She would now love to spend hours being worn and often protests when I tell her she needs to get down and play.

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She looks to us in new situations, and she frequently asks to be held – she’ll scoot up to me and put her arms up and ask, “Baby FangFang?” multiple times a day! She’s a pretty snuggly little girl. One night one of us casually mentioned something about love, and she, sitting next to me on the couch, looked up at me and put her hand on my cheek, and announced, “FangFang love.” Cue heart melt!

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She has continued to warm up to Matt more and more. She still prefers me, but she allows him to put her to bed, and if I’m unavailable, she’ll let him hold her, and she asks about him when he’s away from home.

She is generally a happy little girl, for which I’m very thankful, since that was the impression we got of her from the photos her foster home shared. I was worried that it would take a long time for her spark to come back after leaving them and coming to us. She does have occasional sad moments whose reason we can’t entirely discern and for which her English is insufficient to explain, which is very sad but is also very typical for kids adopted internationally. We try to hold her close and reassure her that we love her and she is safe, and eventually something (usually food) brings her back to her typical happy state!

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She also loves the other kiddos, and they love her, though there is certainly a large amount of interpersonal drama between any and all of them, too. We’re trying to cultivate kind, generous hearts and develop good relationships, but everything is a work in progress!

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I’m not entirely sure how to read her interactions with others outside of our family. Thus far, we have kept her with either Matt or me at all times. We haven’t exactly cocooned (a common adoptive family bonding strategy, keeping your child’s world small for a period of time after they come home, staying home as much as possible), largely due to the necessity of medical appointments and evaluations – in addition to our visit to the Omaha clinic, so far she has seen our pediatrician, had a local X-ray, a CT scan, a private PT evaluation, a private OT evaluation, an evaluation by the school system, and met with a local orthopedic surgeon. We’ve also been going to our church worship gatherings on Sunday mornings and just keeping her in the sanctuary with us for the entire time, and we’ve had a few people come over for dinner since we’ve been home. She is definitely more of an extrovert than most members of our family – she loves interacting with others. For the most part, she warms up to people pretty quickly but still continually looks to us for reassurance and generally behaves appropriately with them, which is encouraging. However, we do notice some overly affectionate tendencies, and there was one night recently on which some friends stayed for dinner, and within minutes of their arrival, she was reaching out toward the guy for him to hold her – the return of the mommy shopping! We weren’t sure that she initially realized that he wasn’t Matt – but it was still a little disconcerting.

We’ll continue to take things slowly. In the grand scheme of things, 6 weeks is not very long, particularly for a child who has lived for over 3 years outside of a family. There are definitely moments during which Matt and I yearn for a date night by ourselves, or we think about being able to go to our missional community group meetings, or I wish it were easier to go hang out with friends. This is just a stage, though. Laying the groundwork for healthy, secure attachment is so important, and we want to respect that and take the necessary time to do it right, so we’ll hang in there, keep reading the signals, and do what we believe we need to do to facilitate bonding and attachment.

Overall, we are so glad that she really is settling in pretty well. She seems to be increasingly understanding that we are her family and that this is her home. She seems happy. She’s learning English and increasingly able to communicate her needs and desires. We’re all getting to know one another more and establishing these new family dynamics, and everyone seems to be doing pretty well with that. We’re worn out, both mentally and physically, and we know we still have a long way to go, but I don’t think we could ask for much more at this point in our journey!

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!