Post-Surgery Update

It’s been a while since I’ve written – too long – and I miss this space. I have more to say and share here, but first I want to start with an overdue update on FangFang’s surgery and recovery. My last post was written the night before surgery. In the morning, we were up and checked out of our hotel and arrived at the hospital by 6:45, our designated check-in time.

Her surgeon actually saw us in the lobby while we were checking in and came over and talked with us. He said he might end up only rodding her right leg – that was the first I’d heard of this plan to potentially leave the left femur alone, and it left me anxious that we’d have to go through this surgery twice in a short span of time, instead of getting the recovery period for both legs over with all at once. There is a reason that we travel to Omaha, though – Dr. Esposito is one of the best (if not the absolute best) pediatric orthopedic surgeons working with children with OI, and we’d have to trust his judgment.

Overall, we were pretty impressed with the team in place in Omaha as we talked with them in preparations for surgery and as they helped FangFang get acclimated.

We had only one unpleasant interaction – one of the pre-op nurses had asked us to get out a favorite blanket or stuffed animal for FangFang that she could take back to the OR with her, so we did that, only to be told by the nurse who was wheeling her back for surgery that she wasn’t really supposed to have her own things with her – but when FangFang protested and I argued that the other nurse had specifically encouraged us to get out her blanket, she was allowed to take it back with her.

Once FangFang went back to the OR, my mom and I ate breakfast (FangFang was NPO in preparation for her surgery, and this girl loves her food – no way were we going to be able to eat in front of her without feeding her!) and then sat in the waiting room and did a bit of work.

I was initially disappointed when the nurse came out to tell me that they’d finished with her right femur and were not going to touch her left, but when Dr. Esposito and Dr. Wallace came to talk with us, they said it was because the rod in her left leg actually looked better than they expected, and they didn’t think they could get it much better right now, so they’d rather not touch it, and hopefully we’d get a couple years out of it. I could live with that!

The before and after pictures are pretty striking. You can see the extreme curve in her femur as it was before surgery (and the way it lights up bright white, indicating that it has broken and healed that way over numerous untreated or poorly treated fractures, which makes my heart ache). And then you can see how much straighter it looks now with the rod placed. Of course, the surgeons had to break her femur in two places in order to straighten it, which is a major cause of the pain she experienced after surgery.

I was allowed to go back to FangFang soon after that, once she started waking up, and she immediately started crying and asked for me to hold her and wanted food. The nurses warned me that giving her too much food and drink too soon would likely upset her tummy, but as a mama of a child who has experienced food insecurity and who senses safety in part through the availability of food, I made the choice to let her eat and drink more than would usually be offered.

Nervous about hurting her, fresh out of surgery and with so many wires attached, I did leave her on the bed and just wrap my arms around her while we were in post-op, but as soon as we were up on the floor, the nurses helped me get her onto my lap, where she settled in much more happily.

And there I was rewarded for my liberality in dispensing apple juice and jello with several instances of projectile vomit! We got ourselves cleaned up, though, and FangFang slept for much of that first afternoon, leaving my lap only when it was absolutely necessary.

We tucked her into bed at night time, but none of us slept all that well – she still had an epidural in for pain control, and with that, they were checking vitals every 2 hours. The next morning we talked with the pain management team about getting rid of the epidural and transitioning to IV and then oral pain meds. They have a good strategy in place, in which they turn off the epidural but leave it in and see how the patient responds, and if they need the epidural meds, they can always turn it back on. FangFang definitely experienced more discomfort without it than with it, but everyone agreed that her pain seemed manageable, and she appreciated not having to be hooked up to so many wires. She, again, spent most of the day sitting on my lap. We watched some Daniel Tiger DVDs and played with a doctor kit Matt’s cousin ordered for her from the gift shop.

And in the evening we went for a ride in the wagon, which she loved. She so wanted to get out of that hospital room!

While we were out for our walk, I grabbed a photo of these signs hanging on our door. Everything about the Omaha Children’s Hospital speaks to their expertise in interacting with children with OI. It’s not just that Dr. Esposito is so amazing – though he is – it’s that everyone there is experienced in working with kids with OI and knows how to do so.

As wonderful as the hospital is, we’d really much rather be home. We advocated for a discharge as early as possible, and everyone was on board with us leaving the hospital and heading home Thursday morning, earlier than we’d thought possible, for which we were all thankful!

We were able to keep her pain well managed with just the oral pain meds – honestly, she seemed more disturbed by the pain from removing bandaids than by any pain associated with the femur fractures and surgery itself! – and within a few days of our arrival home, we were able to wean her off of the heavy duty meds, down to just Tylenol and Ibuprofen.

We were all glad to be home and be together. For the first day or two, FangFang didn’t move around much, but this girl wasn’t going to let anything like a post-op femur rodding slow her down for too long – within a couple days of our arrival home, she was scooting around the house just like normal. She hated having the splint on, but she tolerated it, and we’d give her short reprieves for a bath or, once she was three weeks post-op, to let her sleep without it. That wasn’t exactly doctor approved, but she was sleeping horribly with it, and consequently Matt and I were sleeping horribly, and we just hoped we weren’t being horribly foolish!

Our instructions were to keep her non-weight-bearing for 4 weeks and then we could remove the splint and go in for follow-up x-rays with our local orthopedic surgeon, which we did at exactly the 4 week mark. Everything looked good on x-rays, so she was cleared to return to normal activity, for which we are all very thankful!

FangFang is back to crawling again, and she and I have been going to aqua therapy – physical therapy in the water. Aqua therapy is particularly awesome for kids with OI, because they’re able to work on developing skills without having to support all of their weight to do so. She’s doing great with supporting increasingly more of her weight while standing, and last week we started working on taking some steps and cruising. She’s just starting to get the motions down for that, which means I support most of her weight while she works on it, and my arms were sore after our last session! She is growing and developing and working on gaining those skills, though, which is so exciting to see.

This phase of the journey is a bit more unpredictable. I knew we’d need to get FangFang into PT, I knew we’d work toward getting her to stand and walk, and I knew she’d need her right femur rodded before she got too far along toward those goals – but now that her surgery has happened, it’s impossible to say how quickly she’ll begin to stand and maybe even walk on her own. She is motivated and excited about each new milestone she reaches, and we’ll just have to see what the next months hold for her and for us!

Surgery Tomorrow Morning

Tomorrow morning we take an important step in this journey of living life with osteogenesis imperfecta (OI). FangFang is scheduled for bilateral femur rodding surgery. For those of you who would enjoy a detailed explanation, feel free to check out this link from the OI Foundation. The short version is that right now, her bone density is very low, and her right femur has significant bowing (curving). That means that if she were to try to pull to a stand (something she has been starting to attempt recently), chances are high that her femur would snap. Try to imagine for a moment the pain that would be involved in a significant break of this largest bone in your body, and you’ll understand why we’d like to avoid that scenario. Her left femur fractured about 10 months ago in China, and she had a rod placed in that leg at that time, but it will be replaced during this surgery, and her right femur will be rodded for the first time. These rods will act as internal splints, straightening the bones, giving them added strength and stability, and lessening the severity of any fractures that do occur in the future.

FangFang’s orthopedic surgeon recommended this course of action when we saw him in January, and it is the consensus of the other parents with whom we’ve spoken that it is absolutely the best choice for her. And so, instead of spring break on the beach or exploring a fun area nearby or just enjoying some quality family time at home, we have spring break: bilateral femur rodding edition.

My mom and FangFang and I made the 5 hour drive to Omaha this afternoon and got settled into our hotel room, where we hope to get some sleep before an early hospital check-in tomorrow morning.

Would you please pray for us this week as we tackle surgery and these first few days of recovery? In particular, these are some things for which we’d very much appreciate prayer –

  • that the surgery itself goes well. The surgeons performing her surgery are some of the very best surgeons in the world who specialize in caring for children with OI, and they have done this exact same operation innumerable times, and we have full confidence in them, but no surgery is ever routine when it’s for your child.
  • that we are able to manage her pain – both physical and potentially emotional – well over the next few days. Physical pain after this particular surgery is intense, and we, as well as the nurses involved in her care, will need to stay ahead of her pain with the best medications for her. Additionally, we’ve done all we can to explain what’s going to happen and read books and show her pictures, and I’m as confident as I can be for a 3-year-old who has been exposed to English for just over 3 months that she’s well-prepared, but it’s hard to know how much she understands. She’s going to wake up after surgery with an epidural and double leg splints. She’s such a happy kiddo, and I’m hoping she won’t be too distraught by her situation this week.

  • that my mom and I are able to comfort and entertain her well this week. She’s going to be in pain, and she’s going to have very limited mobility. We’re going to need to be creative and hands on in our parenting (and grandparenting) to care for her well, and while I’m hoping for some bits of down time, I don’t really know what to expect, and I know I need to be prepared for some long days and nights.
  • that Matt and our other 3 kids can have fun together during this week at home. Honestly, I think he has the harder parenting job this week, caring for 3 kids by himself 24/7 (except for brief breaks offered by a friend, for which I am SO thankful – having a couple hours to himself to run to the gym is going to make his job so much easier!).

  • that we can head home early. I’ve been told that if everything goes well, we can hope for discharge on Thursday or Friday, then they’d like us to spend another night in town, and we’d be able to head home the next day. I’d really like to be able to head home ASAP. I don’t enjoy being away from Matt and the rest of our kids, and I think FangFang will be much happier at home with her brother and sisters than stuck in a hospital room. Even tonight, as she was falling asleep in her hotel pack ‘n’ play, she repeated several times, “Night night, Atta.”
  • that we’re able, as a family, to care for FangFang well even as we return home. I really don’t know what these next few weeks will look like, and I want to be flexible with our daily routines and with school and with my expectations of what things will look like, and I hope we can all be selfless in our care for her during her recovery.
  • that the rods do their job well. FangFang very much wants to be able to stand, and we believe (and all the medical professionals with whom we interact believe) that having rods in her femurs will help her to do so safely, and we hope that is the case.

I’ll keep you informed as I’m able. Thanks so much for joining us in prayer as we take this step forward with our baby girl!

An Encouraging Book: Different by Sally and Nathan Clarkson

A while ago, my best friend from college recommended Sally Clarkson‘s podcast to me, and it’s now one of only two podcasts to which I make time to listen regularly. I’ve found it to be such an encouragement to me in my mothering. When Sally started talking about the new books she had coming out, and I read her guest post on Ann Voskamp’s blog, I knew I had to read this book. It’s called Different: The Story of an Outside-the-Box Kid and the Mom Who Loved Him.

You see, I have at least one child who is an outside-the-box kid. I actually suspect all four of my children may be, each in their own way, likely manifesting it in different ways and at different times. However, there is one child in particular of whom I am thinking right now. Matt and I have had innumerable conversations about what we believe is going on with this child, and we’ve prayed and sought advice from several people whom we trust. We’ve just recently begun the process of exploring whether it might be good to have some more formal professional evaluations done.

In the midst of all that, there is so much doubt and second-guessing. Is my child struggling in this area because I have failed them in some way? Has my discipline been too harsh? Too permissive? Have we made poor choices, and is what we’re seeing now just the result of that? How are the things we’re seeing affecting our other children? Am I a horrible mother? 

And into those fears and questions stepped Sally and Nathan Clarkson with this book, and it was such an encouragement to my soul. Frustrated by the frequent unexpected delays to my agenda that this child’s behavior can cause, I read Sally’s words, “And I began to deeply perceive that people made in God’s image, no matter how challenging, are of more importance to Him than efficiency, control, or order” (page 27). To my fear that my parenting is ineffective and that everyone does or will view me as a bad mom, she speaks, “So instead of worrying about what others thought or about what I thought children should be like, I tried my best to focus on Nathan’s true needs, his actual capabilities, and what he needed most to learn. I aimed at reaching his heart through consistent instruction, encouragement, accountability, and training, moving him little by little toward self-control and responsiveness to our family ways” (page 27).

I found reassurance that I wasn’t the only one to make a commitment to this as a parenting strategy: “So I learned to pick our battles carefully. I tried to focus on those things that mattered spiritually, not minor issues or man-made rules. I intentionally pressed in on issues that would affect relationships, character, and faith and tried to back off of other, less crucial issues” (page 41). That same strategy is the reason you’ll often see our big girls out and about with drawings on their faces these days. It is certainly not my preference – but we’ve got bigger battles to fight. I’ve told them that if they’re going to draw on themselves, it needs to be with washable markers, but beyond that, we allow it.

I read challenges to press on in pursuing and loving this child – “[God] does not require us to control our children or friends, much less ‘fix’ them. But he does call us to pay attention, to love others, to be the ones who reach out as consistently as possible…My most important ministry would unfold one obedient moment after another as I learned to love and understand and serve those who were closest to me. Nathan or one of my other family members would push my buttons. And I would have to overcome my feelings and practice giving patient answers, to give up my rights one more time…[W]alking in the power of the Holy Spirit often means choosing to be patient and loving when you feel like being impatient and angry. It is the practicing of growing in these areas that grows our spiritual muscle” (pages 136-137).

I found encouragement that persistent compassion and grace can reach hearts – “Knowing when to correct and train, when to overlook, and when to enjoy and praise is a constant balancing act for a parent, but I tried to err on the side of compassion and sympathy with Nathan. These seemed to be the tools that opened Nathan’s heart to correction. And these gifts could only be given through personal time invested over and over again” (page 145). And I saw reassurance that prioritizing my relationship with my children matters – “If we are gentle, loving, kind, forgiving, then our children will have a picture from us that God is also gracious, kind, loving, forgiving” (page 160).

Perhaps most encouraging of all, I read that I was not alone, that even Sally Clarkson, who speaks around the world, encouraging moms, had hard days in parenting, and yet she made it through them. She writes, “[M]any dark, challenging days filled my journey of motherhood. Yet my foundational faith told me every day that God was good and that He had given me this day to live out my faith in Him by doing my best to bring light, goodness, and kindness into the world. And so it was amidst my struggles and trials that I learned the secret of celebrating life as it had been given to me” (page 194). And she raised a son who, while outside-the-box, has learned to follow God in his own unique way. He himself says, “The truth is, we live in a deeply fractured world, and we don’t always have a choice about being broken. But we do have a choice about where we let our brokenness lead us. We can follow it into escape or addiction. But we can also follow it straight to God. To the One who knows us inside and out – with all our mistakes, broken parts, insecurities, and battles – and who still loves us” (page 186). And of the fruit of his experience with his difficult growing years, Sally writes, “I am convinced that the stories he is now telling could never have had such depth if his soul had not been shaped by the pain and tears of being different” (page 214).

Having an outside-the-box kid doesn’t mean I’ve done anything wrong as a mom. It doesn’t mean that there’s anything wrong with my child. It means that this is the path God has set out for us to walk, and we’re going to figure it out together, certainly making mistakes, but attempting to live honorably, challenging one another, and having our lives enriched along the way. I was so encouraged by this book, and if you are parenting an outside-the-box kid, I’d encourage you to pick up a copy and read it, too.

Homeschooling: It’s Not All (or Mostly) About Academics

Today’s post is a follow up to yesterday’s post with our mid-year update on our homeschooling year. At least in our house, homeschoooling is not all – or even mostly – about academics. We’ve found that the opportunities to address and build character are plentiful – generally more plentiful than we’d like. More than we want them to learn academics, we want them to grow as people.

This morning was no different. One of my girls needed to do a math lesson. The actual work of the math lesson would take her less than 5 minutes. However, from the time we got started on it until the time it was done, an hour and 15 minutes elapsed. Most of that was taken up with addressing issues of personal growth, in particular emotional growth.

A big thing we’re working on with our girls is emotional development. Specifically, we’d like them to be able to identify and self-report their emotions, and we’d like them to have healthy ways to self-regulate when they are dysregulated – when their more negative emotions are feeling overwhelming. We’ve found that the movie Inside Out is a great tool for us in that endeavor.

Today the daughter with whom I was working on this particular task drew two pictures for me as we were working through this situation. This was the first.

Here, Sadness is in charge of the control panel, and she’s giving a speech. Anger is throwing bricks to build a wall to keep Joy away, even though she is still in the control center. Joy is calling to Sadness to help her, but Sadness wants to listen to Anger, so she is saying, “Joy, stop talking!”

As my child and I talked through the situation, she told me she was ready to draw a new picture, and this is what she drew.

Now Joy has broken down the wall, about which Anger is not happy. Joy is running back to the control panel, telling everyone else, “Get out of my way!” Sadness is letting her take over again.

After that picture, we were ready to have another conversation about tackling her math work. When we’d first started the morning, she’d asked if she could have one minute to play a game of tic-tac-toe with her sister before she did math, and we’d made an agreement that that was fine, but she then needed to start math right away. However, once the game was over, she wanted to cut out their game and glue it onto another paper before doing math, and I’d said she needed to honor her agreement and get started on math, but she could cut it out as soon as she was done. That was what aroused some strong emotions and prompted our opportunity for pursuing some growth.

In our conversation after we had worked through some of those emotions, I told her I realized it was important to her to cut out the tic-tac-toe game, and I wanted to help her get to a place where she could do that. It was important to me, though, that we get started on math, since that was what our agreement had been. Perhaps we could make a compromise, though – she could do half of her math exercise right away, then cut out the tic-tac-toe game, and then finish her math. She countered with a proposal that she do only a quarter of it, but I showed her what the math exercise was and how quickly she’d be able to do it, and she agreed to do a full half.

Then it took less than five minutes for her to do half her math exercise, cut out the tic-tac-toe game, and then finish her math work.

And this mama was exhausted and told the big girls they could have a Wii bowling break before lunch, and we’d do more school after lunch!

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!