Post-Surgery and Travel Update

Thank you so much to all of you who prayed us through our travels to Omaha for FangFang’s oral surgery and our return trip back to Missouri!

We left early Thursday morning and made it to the hospital just in time to meet the dentists who would be performing FangFang’s surgery the next day and do our pre-op consultation with them. After that we had the evening to ourselves, so we went and checked into our hotel…

…and then went out to dinner at Block 16, a hipster sandwich shop downtown, which all of us enjoyed! We tried to get FangFang a good last meal with all her teeth 🙂

She went to bed pretty well, and she actually did better than I thought she might with not being able to eat or drink after 8:00 AM. I woke her up around 7:45 to give her a clear liquid breakfast (jello and apple juice were her choices), and then I let her play with an iPad as a distraction while Catherine and I took turns getting some breakfast. We had a 10:00 AM check-in time at the hospital, so the morning was actually reasonably leisurely, and it wasn’t long before we were playing in the hospital playroom with brief breaks to consult with our nurse, a nurse practitioner, the dentists, and the anesthesiologist.

She was pretty happy right up until surgery. I actually declined Versed, and everyone seemed to think that was a good choice, because she seemed so comfortable and happy interacting with everyone, but as soon as she got about 10 feet down the hall from me, she started wailing, and they said I could come back with her. Her oral surgery was taking place in the procedure suite, which apparently has a lower standard of sterility than the OR, so I was allowed to walk into the room with her. I really wish all hospitals would do that for all procedures, whether they’re in the OR or not. FangFang is going to need a number of surgical interventions over her lifetime, and I’d prefer that, as much as possible, she see hospitals as places that help her, as opposed to the locations of traumatic experiences. Nurses seemed very concerned that it might be overwhelming to me to see her go under sedation in preparation for the procedure or have her throat suctioned afterwards, and they didn’t want me to feel uncomfortable. I assured them that I’d witnessed my husband experience cardiac arrest, so nothing they were going to do that day was going to make me uncomfortable, and if I needed to get out of the way, I’d do it. And most importantly, this is about FangFang, not me – if she’s more comfortable with me there, that trumps all else. They let me hold her and sing to her while she went to sleep, and I was so glad.

Catherine and I grabbed some lunch at the hospital cafeteria and then headed back up to our room to wait for FangFang. The dentists came and talked with us and said they’d pulled 5 teeth – the offending back molar that had the deep cavity giving her so much pain and her 4 front teeth, all of which had significant cavities. Because they’d pulled so many, they hadn’t needed to cap any teeth, but the crowding in her mouth will continue to make brushing and flossing a huge priority. They do not believe she has dentinogenesis imperfecta but that it’s more likely that we’re playing catch-up from her years in an orphanage, plus the crowding of her mouth, which is good news, because it means there’s some chance she won’t continue to have such serious dental issues.

It wasn’t long before I was allowed to go back to FangFang in recovery, and I walked in just as she was starting to open her eyes. She was in pain and angry. We got her Tylenol right away, and she wanted to leave that area, so we got to go back to our room right away, but she was still mad. We gave the Tylenol a bit of time to work, but it didn’t seem to be taking the edge off at all, so it wasn’t too long before we requested something stronger, and once she had a dose of Oxycodone, she started to calm. She cried for the mouth pain and cried in hunger and cried from her sore throat every time she had to swallow (she’d been intubated for the procedure). We started gradually introducing some clear liquids – apple juice and water and then jello, and she handled that well (no projectile vomiting!), and just before 4:00 they said we could go!

We weren’t sure how FangFang would do on the car ride home, and I was so thankful to have another adult with me who could help monitor her while we drove. She was pretty content watching Frozen and Daniel Tiger, though, and slept just a bit. She was even happy enough to try on goofy hats at a truck stop where we stopped to give her more pain meds and get gas!

We made it back home just before 11:00 last night, and she was very happy to be back, as was I!

Honestly, the trip itself went pretty well. That was really largely due to Catherine’s presence with us. I so enjoyed getting to chat with her on our drives – it was so much more fun than just driving by myself – and as a mom to four, it almost never happens that I get 10+ hours to hang out with a friend! And she was so helpful in assisting me with everything FangFang needed, getting juice or jello or washcloths to wipe up blood, and entertaining her while I talked with the doctors and dentists. I’m so, so thankful she came – such a blessing and encouragement.

And I’m so glad to be done with the procedure. FangFang was in a fair amount of pain yesterday but seems to be feeling a million times better today. She’s really been in pain for almost a month, and I’m so glad we were able to get this dental work done quickly and be done with it.

Re-entry is always rough, at least for me. I’m so excited to see everyone, but I’m also worn out. I really just want to have some quiet, alone time to read a book and relax. But there’s unpacking to do, and I’m behind on my work week since I was gone for 2 days, and kids need to be fed and cared for, and things at the house are just a little out of sorts any time I return from being gone. It always feels overwhelming to me, and I get snippy. There’s nothing that reveals your selfishness like parenting – and I think that’s doubly true when you add in any special needs. I do feel stretched, and I do feel tired, and I do feel overwhelmed at times, but that’s not a license to be unkind to anyone else, and I definitely fail at living that out.

I’ve tried to spend some time helping everyone settle back in. FangFang and I snuggled and read a book this morning, and a bit later Madeleine CaiQun and I got some one-on-one time reading on the couch together. Miranda and I had some chats, and Atticus came and snuggled with me for a while.

Matt has the kiddos out at a park right now, and I’m hoping to use this time well, doing some catch-up on all the tasks I need to tackle, but also to recharge and be prepared to love well when the rest of the family returns. I spent some time reading my Bible and praying and journaling, which has helped to settle my heart. I’m hoping that when everyone comes home, we can have an evening of enjoying being together, both in cleaning up the house some but also in just spending time together. These people have my heart, and I want to live that out, day by day, moment by moment.

Homeschooling 2016-2017 – Mid-Year Update

It’s been rather a while since I’ve written about our progress with homeschooling this year, so I think we’re due for an update! I wrote in detail about our curriculum choices for this school year here, and we are in large part finding that those are working well.

Our curriculum outline lays out a pathway for getting through all of its materials in 180 days (36 weeks). By the time I left for China in December, we’d made it through 11 weeks of curriculum, something about which I sometimes felt a significant amount of stress. I knew life was only going to get crazier once FangFang came home, and I was worried that we’d never finish “on time” if we couldn’t even get through a third of the material before I left. Fortunately, there actually is no “on time” in homeschooling, particularly in these early elementary years. It doesn’t really matter if you read about the fall of Rome 10 months or 14 months after you start with Creation. And actually, we’ve been moving faster post-adoption than we did pre-adoption (go figure). In the 4 months between starting this school year and heading to China, we made it through 11 weeks of curriculum; in the 2.5 months since Christmas, we’ve accomplished 8.5 weeks of study. Phew! We will eventually finish 🙂

We’ve definitely had to revise our routine since our homecoming, though. I’ve found that math has to happen first thing in the morning, or it doesn’t happen at all. It’s my girls’ biggest “workbook” type subject, and they don’t have the focus or the patience for it later in the day, whereas if they start with it, they work through it pretty quickly and do a good job. We’ve actually made some changes in Madeleine CaiQun’s math curriculum. I’d started the year with Singapore grade 1 math for her, and I’d known within a few weeks that it might not work for her for the whole year. The program is very heavy on mental math and on grasping numbers as abstractions, and she just doesn’t see things that way right now, so nothing was sticking. Right now I have her doing some Rod & Staff workbooks to really solidify basic addition and subtraction facts in her mind, and once she finishes those I’ll make a decision about what to have her do next. I love that we can investigate and find resources that work well for each child as needed!

After we tackle math, we usually have a bit of play time, and then we move on to “reading school,” by which I mean Bible, History, Geography, Literature, Science, Language Arts, and Reading – all of the subjects whose focus centers around my reading out loud to the girls. I always envisioned us snuggling on the couch and reading together, but it turns out that small children’s vision does not always coincide with mine, particularly when the littles are incorporated into the day 🙂 Usually I bring out some toys with which all the kiddos can play while I read, and it’s been a process to learn which toys work best. Trains still require my assistance to build a good track, so those work only if we build the track before launching into school.

Wooden blocks, Duplos, Whittle World, and Magna Tiles are all good options for us. The general rule for the big girls is that as long as they can play without talking and interrupting while I read and they can talk with me about what we’re reading when I ask questions, they’re welcome to play during reading time! We obviously do a lot of parenting-everyone-mixed-with-school, but we’ve found that it works well for us. We’re usually done with our school day before lunch, and in the event that we’re not, we just pick up whatever we have left to do in the afternoon, either after lunch or after rest time. Then I leave our literature reading for bedtime, which is a much more relaxed, snuggly atmosphere in which to get through those longer portions of fun reading.

The littles have completely given up napping for me, and I’ve decided to embrace it. I could keep fighting for it and block off hours of every afternoon for my generally-fruitless attempts to get them to sleep, which produce high levels of frustration for everyone, or I can just accept the fact that for whatever reason, this is our new reality, and we need to make our choices in light of that fact. It actually frees up our day quite a bit. It means we have more room for walks and park outings. We don’t have to finish school before lunch. I can let the kids play longer when things are going well. I’d dreaded this milestone, but I’m actually enjoying it, though I am pretty wiped out by the time Matt gets home in the evenings.

Anyway, in terms of school itself, we’re enjoying what we’re learning. I appreciate the early exposure to some topics I don’t remember covering until much later. We’ve learned some Greek and Roman history and read some mythology, which was a lot of fun. Most recently we are learning about ancient China, reading about the Great Wall, and enjoying some stories set in China, which has obviously been a great connection for our family! The girls are learning about nouns and verbs and memorizing some poetry. We finished a long unit centered around animals and are now studying the human body. We’re talking a lot about the Holy Spirit right now as we study the Bible, and we’re memorizing some Bible verses related to things we’re working through personally right now. Most recently, Miranda and MeiMei and I memorized Psalm 103:8 – “The Lord is compassionate and gracious, slow to anger, abounding in love,” reminding ourselves of who God is and how He calls us to follow after Him in acting in compassion, grace, slow-ness to anger, and love, but He also makes it possible for us to do so. Right now we’re talking about how God has a different path for each of us, but we can all follow Him in the individual things we’re doing, and we’re memorizing Ephesians 2:10 – “For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.” It’s fun that the littles also ask to have turns repeating the Bible verses as we work on them, and I enjoy including them in those small ways as we go through our school days! We also do just a few things that are truly centered around them, singing songs together, reading simpler books, and working on shapes and colors.

The big girls have continued to do gymnastics, with Miranda in particular starting to develop her own goals there – namely to climb the rope all the way to the top of the ceiling and ring the bell. She’s been working hard, and last weekend she was able to accomplish her goal!

Additionally, we try to take advantage of opportunities that present themselves for us to take the kids out to special events. A few weeks ago, the big girls and I went to see the ZuZu African Acrobats with some friends from church.

And last weekend, we went to a Mandarin for Tots activity at the library. We attend a number of art-related events, as well. Obviously most of our social interaction occurs within the context of our family, but we’re also attempting to teach our kids how to engage with our community, too.

We’re also embarking upon a new adventure in schooling – we’re officially enrolling FangFang in public school. However, she won’t actually attend school outside of our home. In our efforts to do everything possible to make sure she has every chance to grow and develop to her potential, we went ahead and had her evaluated by the local school district, and her delays are significant enough that she qualifies for services. However, given the current fragility of her bones and the fact that we are still very much working on building attachment, everyone agrees that the best place for her right now is at home. I’ve heard horror stories from parents pursuing and working through IEPs for their children, but honestly, we’ve had an incredibly positive experience. It’s pretty awesome to me that in these assessments and meetings we’ve had to evaluate her development and discuss the best possible situations for her, there have always been at least 3 adults (usually more) from the school district involved and offering their input and expertise. Everyone has been happy to answer my questions and to listen to what I had to say – whether about the effects of osteogenesis imperfecta or our focus on attachment – and thus far, it has been a very positive experience. The current plan is that a special education teacher and a physical therapist will come to our home (or we can meet at a park or someplace where we can work on some of our PT goals) once a week for 30 minutes, and an occupational therapist will join them every other week. I’m excited to get started working with them and see how they can add to our efforts to help FangFang grow and develop!

Overall, I am really enjoying our school year, and I love getting to work with the big girls on formal school activities but also give them hours of time to play and enjoy being kids. I am thankful for the opportunity to homeschool and look forward to continuing to learn together!

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!

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.

Preparing to Parent a Child with OI: What Does that Look Like?

When I first heard of osteogenesis imperfecta (OI), I assumed that it just meant that the bones of the person affected by it would fracture more easily than those of other people, but as I shared here, there’s actually a bit more to it than that.

There’s also more to parenting a child with OI than I realized at first, and I’ve spent the last 9 months doing all that I can to learn about that. I began by talking to moms of kids with OI and adults with OI as we were reviewing our daughter’s file. Of course, I also talked with our pediatrician, who consulted with a local orthopedic surgeon, and I made contact with the orthopedic surgeon and endocrinologist who run the OI clinic in Omaha, offering some of the best care in the world for people with OI. All of that was incredibly helpful, and  I don’t want to discount the expertise of medical professionals, but OI is such a rare condition that very few doctors and nurses have experience with it, and I’ve so appreciated the opportunity to learn from the experiences of parents who are living right now the reality of life parenting children with OI.

One of the moms with whom I connected added me to a Facebook group of parents who had adopted children with OI so that I could ask questions there, and those mamas answered so many of my questions. And once we accepted Fang Fang’s referral and committed to moving forward with adopting her, I joined the Facebook group for all parents of children with OI, and that group is an awesome resource, as well. And these parents? They are amazing. Not only do so many of them take such excellent care of their own children, but they also have gone out of their way to pass on their wisdom to me (and to other expectant parents).

One thing I’ve learned from those parents is the importance of having a “break box” on hand at all times, whether we’re at home or out and about. Fractures can happen at any time, and we’ll want to be prepared. It’s true that we could go to the emergency room any time a fracture happens, but an ER visit is not always necessary, and even if it is required, we can do a lot to make our daughter more comfortable before transporting her. We should have medication available to address spasms and pain as a first line of defense. Then we should have splinting supplies, so that we’re able to immobilize limbs and splint any fracture at any time.

Another mama actually sent me a whole stash of supplies for the beginning of a break box, each labelled with instructions for use!

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You cannot believe how excited I was to get that box! I also started to add to it gradually as I learned more myself. There isn’t anything like a book you can read about how to parent a child with OI or even about OI itself, but I’ve gleaned so much wisdom from reading other parents’ posts in the Facebook group for parents of kids with OI, seeing what challenges other families face and what advice they receive.

This month another mom who sometimes travels through our area for work stopped by our house and gave me a whole morning of her time to talk about parenting her daughter who has OI and give me a hands-on splinting tutorial! What an amazing blessing! Fortunately, both Miranda and Madeleine CaiQun were willing to help us practice 🙂

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I’ve also learned about the need for a wheelchair – and specifically a wheelchair that is customized for her little body. Fang Fang is tiny, but she is 3, which means she’s at an age at which children are generally able to be mobile themselves. At home, she’ll be able to crawl or scoot, but that’s less socially acceptable at places like Target, and we’ll need to be able to facilitate her independent mobility. Additionally, we need to anticipate fractures. We don’t know when or how they’ll occur, but we do know they’ll occur, likely to major leg bones at some point, so we need to be prepared, and that means having a wheelchair available. We’ll also likely need a gait trainer and/or walker for her at some point, but we’ll wait for her physical therapist to weigh in on that.

I’ve been challenged to be an advocate for Fang Fang, even in medical contexts. I got a bit of a taste of that after Matt’s heart attack in February, but this will be more of a sustained need. Because OI is such a rare condition, I need to be an expert, and I need to be willing to discuss medical procedures and treatments with doctors. I need to ask that her blood pressure not be taken unless absolutely necessary, because the tightness of blood pressure cuffs can cause fractures. In case of fractures, I need to insist that I position her for x-rays, because well-meaning medical professionals who are not experienced in working with individuals affected by OI sometimes don’t know how to move limbs without causing further injury.

I’ve asked many questions of our pediatrician and of other OI moms, but I’ve also been seeking out other resources. I talked with the HR department at Mizzou to help me figure out which insurance plan would offer us the best financial coverage for all the needs we expect to have in the next year. There are two amazing mamas to kids with special needs who are part of our church, and both of them have been so gracious in answering my many questions. I’ve also talked with our local school system. And I’ve made contact with a local organization supporting individuals with disabilities. I have the information I need in order to get her set up with all the local support for which she’ll qualify as soon as she gets home.

By nature, I’m really a very dorky person, so I have actually enjoyed doing all this research and learning as much as possible about OI and how to care for Chen Fang once she’s home. Even if that weren’t the case, though, I believe I owe it to her to prepare as well as possible for her arrival, and I’m doing all I can to make that a reality!