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!

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!

pressing on through weariness

“And let us not grow weary of doing good, for in due season we will reap, if we do not give up. So then, as we have opportunity, let us do good to everyone, and especially to those who are of the household of faith” (Galatians 6:9-10). 

These past couple weeks have been wearying. There are the early mornings, the doctor appointments (and PT appointments and dentist appointments and on and on), and other physical demands of caring for 4 small children – and on top of that, seasonal allergies have arrived here in mid-Missouri. Beyond that, there is the emotional and spiritual exhaustion of parenting. I so often feel so inadequate to be the mother my children need.

And yet…I am the mother God has given them, and they are the children with which He has blessed me. I have no doubt that He is growing each of us through our interactions with each other.

A couple weeks ago, we watched the movie Inside Out again, and we’ve since had some good conversations about when Riley made the best choices, whether it was when anger was in control, or when she was feeling her other emotions, too. Most of the conversations have involved my teaching my kiddos, but one day, Miranda said to me, “Mom, you are letting anger control your choices right now.” And I was. And the intensity of my emotions dissipated immediately, and I apologized, and we moved on.

That’s a lot of what we do these days – moving on, putting one foot in front of the other, and pressing on. It’s all we can do really. In the harder moments, I’ve been thinking about the Bible verses, “Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us” (Romans 5:3-5). So much of parenting is true joy, but there is also the pain of seeing your children make bad choices, of leading them toward righteousness and seeing them turn away. Some days, I just feel done by 2:00. But done or not, we’ve got hours left before Matt arrives home, and I need to press on, and I hope that I am growing in my ability to endure well and growing in character. I hope that my children are, too, though it’s sometimes hard to see that in the small, day-to-day interactions. Yesterday afternoon one of my precious children told me angrily that she didn’t see why she had to clear her plate from the table after lunch – it was a waste of her time, and she didn’t used to have to do it herself. We talked about growth and building character. I’m not sure she believes it to be worth it at this point, but we’ll keep calling her to that standard.

There are many days on which I feel like my level of spiritual endurance is approximately equivalent to that of a six-year-old who resists at every turn the policy that she clear her things from the table after a meal. I want to grow, though. I want to have endurance, character, and hope. I want not to grow weary of doing good. I want to have hope that my children will grow to be kind, loving, and thoughtful human beings who follow the Lord. I want to trust that He is working in both them and me for good through these hard parenting times, and I want to do what He’s calling me to do as their mom.

And as God brings us to your mind in the coming days and weeks, please pray for us to that end.

Hard Work and Much Progress

Since FangFang arrived home, we’ve been working hard to get her in to see all of the doctors and specialists she needs to see, run all the tests we’ve needed to run, and connect her with all the services for which she qualifies. Make no mistake about it – this has been work. She’s been home just over 2 months, and so far we’ve tackled 3 assessments, seen 4 doctors who are going to be integral to her care, done our first adoption post-placement visit, started weekly physical therapy, and started the process to obtain a wheelchair. I’ve also had approximately 587 phone calls and occasionally some e-mails with various nurses, schedulers, and insurance company representatives. In the next couple weeks, we also have appointments with another 3 doctors and a dentist, plus an IEP meeting, and we’ll start physical therapy through the school system. Every once in a while we have a week with only one meeting or appointment (our regular physical therapy), and that feels so amazing and free, because most weeks register at least two appointments, sometimes more – this week has five. And it’s real work, coordinating all of those. There are a lot of balls to juggle in being a mama to a kiddo with special needs. Add to that the fact that it has been about 2 weeks since I’ve gotten both littles to nap at the same time on the same afternoon, and this mama is spending quite a bit of time emotionally and physically exhausted.

But you know who is working harder than I am? This girl.

For all of the time we’ve known her, she’s been quite adept at scooting herself around on her bottom, but she’d never independently shown us any ability to crawl. In fact, she acted like she’d never done any sort of “tummy time” before, but even so, it took her exactly one week of physical therapy and working on skills at home to start army crawling. The next week she was rolling over multiple times in a row and also pushing her stomach up off the floor to get into a crawling position. She’s also been telling me, “Stand up!” She loves being held in a vertical position, though I’m careful not to place any real weight on her legs.

Seeing her hit these milestones is amazing. She’s my fourth kiddo, and I’ve never celebrated a first army crawl with this level of excitement. She is clearly pushing herself – in fact, she’ll regularly look at our physical therapist or at me and say, “so hard, so hard.” But she’s also so excited to be able to master these skills that she sees others using. The joy on her face as she experiences the fruit of her labors is beautiful.

And now? FangFang is trying to pull to a stand. This is actually a rather dangerous situation, so we’ve strongly discouraged it for now. With her current bone density and the degree of bowing her right femur is showing, attempts to support her weight on her legs are highly likely to result in the snapping of that femur – an experience we’d all like to avoid. We’ve scheduled bilateral femur rodding surgery for the end of this month, and we’re hoping we can make it to that date without any issues. I cannot wait to see her progress after that surgery! I imagine it’s going to blow us away. Whether she walks or not is not important to us, per se – we love her because she’s our daughter, not because of her capabilities – but we want to facilitate her growth to whatever her full potential is in every area of her life, and it’s exciting to see her moving forward day after day. She’s an amazing kiddo with a huge sense of determination, and we’re fortunate to be traveling together with her on this adventure of life.