Omaha 2018

Did you catch that title? “Omaha 2018.” No subtitle. In contrast to our four trips to Omaha in 2017, my hope has been that this would be our one 2018 Omaha excursion – but I knew that would largely be determined by what we found out during this trip.

About a week and a half ago, we loaded up our minivan and packed up our family of six and drove out to Omaha, where we were overdue for FangFang’s annual OI clinic visit. World-class practitioners in multiple specialties related to osteogenesis imperfecta (OI) work together in Omaha to provide a clinic experience that, to my knowledge, is unmatched.

We arrived on Tuesday night, and FangFang and I headed to the hospital on Wednesday for the testing that would give us valuable information about her growth, her bones, and her body in general. This year was a light year in that all we needed to do was a dexa scan (which measures bone density) and a collection of x-rays (that check the status of the rods she currently has placed in both femurs, both tibias, and her left humerus; show us the status of her spine; and generally look at how her bones are growing and whether there have been significant effects from any recent fractures).

The highlight of the day for us was seeing FangFang’s former foster sister, Xiao, whom she knew in China before we ever met her. Our families have stayed in touch since the girls have come home, and we hope to continue to be able to schedule their clinic visits together and maintain this relationship for them. Our children from China have so little from their pasts – these connections that we can help them keep are so special. And in each other, they each have a friend who truly understands, who is living life as a Chinese adoptee with OI. Those connections will likely be invaluable to them as they grow and begin to negotiate the world with increasing independence.

We’d actually hoped the reunion would be even larger. There is a third sweetheart, Gabby, who lived at the same foster home as FangFang and Xiao in China, and she recently came home and was scheduled for her first clinic appointment at the same time as us – but unfortunately, her older sister (also from China, also with OI) broke her femur the week before clinic, and their family was unable to travel ☹ That was such a bummer – we’d been so looking forward to seeing all of them! There are a few other families with kiddos from China who have OI with whom we hope to continue to maintain connections, as well. We’re so thankful for these sweet moments between Xiao and FangFang – even at 3 and 4, they delighted in seeing another child like them, using a wheelchair, having scars from rodding surgeries, occasionally sporting a splint – we’re going to do all we can to continue to facilitate these connections for our kiddos!

While FangFang and I did that testing, Matt took our other kids to a park, and once we were done, they came back for us and we all spent the rest of the afternoon playing at the park.

In an attempt at frugality, I’d booked all six of us in a standard hotel room for our time in Omaha. While it was certainly frugal, it was also rather miserable. We were all on top of each other all the time, the kids had no room to run around or play, and it was just generally an unpleasant situation. We ended up spending most of the waking hours during which we were at the hotel letting the kids watch tv, because it was our best strategy to keep the peace. And now we know. We can certainly handle standard hotel rooms for a one night stop or something of that sort, but for any extended stay, it is unwise!

We debated how to handle Thursday morning clinic – whether all of us should go, so Matt and I could both be present for all of these doctor meetings or whether it would be better for him to take the other kids to do something more entertaining, and FangFang and I could focus, undistracted, on our conversations. It would have been great to have both of us there for all of our conversations, but ultimately, we realized that as the researcher and doctor-appointment-attender parent, I was probably going to be negotiating 95% of those interactions, anyway, while Matt parented our kids, and it would probably be easier for him to parent them somewhere other than a hospital room 😉

FangFang and I were at the hospital by 7:45, and we got to chat a bit more with Xiao and her family before clinic started.

After a nurse got FangFang’s height and weight, we were taken to a room that would be our base of operations for the rest of the morning while doctors and other providers rotated around to talk with us about their individual areas of expertise as they related to FangFang.

First up, we saw Dr. Esposito and Dr. Wallace, the orthopedic surgeons. I knew that their assessment of how her bones and the rods she’s had inserted into many of them (both femurs, both tibias, and her right humerus) would largely determine whether we needed to make a planned return trip to Omaha any time this year – and, thankfully, they don’t believe that will be necessary! Of course, we may end up back there anyway – a significant fracture requiring surgery would mean a drive to Omaha for Dr. Esposito and Dr. Wallace to operate – but we at least don’t need to plan anything now! Her left femur rod is the one they have the most concern about. It was the earliest placed, and the surgery was done in China, and it will likely be the first to require revision, but they said that as long as she isn’t experiencing pain or limping, we should leave it alone. We looked at her spine, and her scoliosis is not particularly severe, and the wedging we can see on x-rays has improved in the last year, largely due to the Pamidronate treatments she receives. Essentially, everything looks pretty good from an orthopedic perspective!

We also met with a researcher for a 5-year longitudinal study being done out of Omaha, in conjunction with other research sites, collecting data about individuals with OI to use in research studies, and we’ll have FangFang start participating next year. There is not a great deal of research available related to OI, and we want to do anything we can to be part of developing that, hoping for more and better treatments in the future.

The endocrinology team was very happy with the improvements in FangFang’s bone density shown by the Dexa scan. It’s actually a bit confusing, knowing what the level of improvement was – there is a discrepancy between what the 2017 report shows as her 2017 measurements and what the 2018 report shows as her 2017 measurements, and no one was quite sure why. But, regardless, her 2018 numbers show either a 15% or a 30-40% increase over her 2017 numbers, so we’ll continue with her same level of Pamidronate treatment.

We also saw a dentist and a dietician. The dentist continues to see no OI-related issues with FangFang’s teeth, which is great news. And the dietician talked with me about our diet and what FangFang eats and what her growth trajectory looks like, and she was happy with all that we’re doing, so no changes needed there.

The physical therapist was also very pleased with what FangFang is doing and what we’re working on with our local physical therapist, which was great news! The occupational therapist recommended an OT evaluation and maybe 4-6 sessions of OT at home to work on underlying core strength and skills – grip strength, endurance, screwing and unscrewing. I’m not thrilled to add likely another appointment to our weekly routines, but it’s definitely a good idea to address these things as early as possible, so we’ll see what we can do!

Overall I was very encouraged by the clinic visit, knowing that the Pamidronate treatments are having the desired effect, that her bone density is increasing, and that we likely don’t need to return to Omaha until next year for clinic. That’s pretty much the best report we could hope for!

After clinic, Matt took the younger 3 kids back out to play at a park while Miranda and I stayed back at the hotel room. She did some math and some art while I put in a couple hours of work and then napped. Another consequence of that whole six people in one hotel room arrangement was that no one was getting great sleep!

Friday was a really good day. We’d planned to meet Xiao’s family at the zoo, just to hang out and have fun, and that we did! Another family in town for OI clinic joined us, as well, which was great! They’d traveled all the way from the Bahamas for clinic, making our 5-hour drive look like nothing! The kids loved running around and the zoo, and we’d heard great things about the it, and it did not disappoint.

It was great to have this time to consult with these amazing OI-care experts and so good to connect with other families with kiddos who have OI. We were so thankful for our time in Omaha!

Surgery Update

I’d hoped to get a longer update posted last night, but it just didn’t happen – comforting FangFang when she was feeling yucky and then sleeping when she was comfortably sleeping took priority! I do so appreciate the prayers and support from all of you, though, so I want to let you know where we’re at today!

To back up a bit, we’d been planning for months to do bilateral tibia rodding surgery yesterday, but when FangFang broke her right humerus about 10 days ago, I’d sent a copy of the x-rays to her orthopedic surgeons in Omaha, just in case seeing those images changed their minds about surgery plans. Their assistant e-mailed me on Monday and said Dr. Esposito would talk with me on Tuesday about our options, but I didn’t think much of it. The fracture wasn’t incredibly severe, and operating on two limbs at a time is a fair amount already. However, when we saw him in pre-op yesterday, he suggested that we prioritize what was giving her the most trouble but try to rod all 3 bones if possible. He said he expected the humerus to continue to give her trouble (it had fractured previously in China and hadn’t healed to be as straight as would have been ideal, so we’d already been suspecting it could be problematic for her over time), and as long as it’s incapacitated anyway, we might as well fix it now and just have one surgery and one recovery period for all of it. These are the moments when I am most thankful we come to Omaha for care. Having an orthopedic surgeon who has worked with hundreds and hundreds of kids with osteogenesis imperfecta and can make these recommendations based on years of experience that give him more expertise than anyone else in his field is so helpful to me as a mom when I need to make the ultimate decision about what we should do. Though I was somewhat intimidated at the prospect of FangFang having 3 limbs fully incapacitated for a complete 4 week recovery period, I agreed that his proposal made the most sense, so that became the new plan for surgery, and they were, in fact, able to get to all 3 bones! They were even able to use the FD rods, which can expand with her bones as she grows, which is awesome!

It turns out that adding on the humerus does change the pain management aspect of post-op recovery pretty significantly, though. For rodding in the lower body, the preferred strategy for pain management is to place an epidural, but that epidural does nothing for pain in her arm. When she woke up, she was pretty upset. She got some heavy duty pain meds, all in quick succession, and some oxygen to help her after an intense crying spell, and that all helped.

She remained pretty out of it for most of the afternoon and evening, though. She felt nauseous and wanted to keep her bowl nearby…which was a bit awkward, since she cycled pretty rapidly through cycles of wakefulness and sleep, so she often fell asleep with her head in her bowl. We’d try to lean her back and remove the bowl, at which point she would awaken, outraged, and yell, “I need my bowl!” Whatever you say, my child…

As the afternoon wore on, she started to have some longer stretches of more peaceful bowl-less sleep, though.

And then she had more periods of wakefulness, during which she had very specific instructions for me about how I was to sit next to her on her bed with my arm underneath her head. That I can manage 🙂

We were able to FaceTime with Matt and the kids, too. She remained pretty out of it until later in the evening, though. She had a pretty awake, alert period from about 7:30 – 10:00 last night, in which she seemed increasingly herself, beginning to show off what she was watching on her ipad to her nurse and chatting a bit more.

We actually got a pretty good, long stretch of sleep last night – by hospital standards, at least 🙂 We all slept pretty well until around 4:00, when FangFang was asking if it was time to wake up and eat breakfast, but I assured her it was still night time, and we went back to sleep again. In my least favorite of standard-hospital-policy experiences, though, the lab person came at 5:30 a.m. and turned on the light and announced that we needed to get the nurse to come in un-tape the board under FangFang’s IV hand so she could do a blood draw. I’ve already asked what I need to do to request that the orders for tomorrow morning’s lab work be changed to be for once she wakes up instead of at 5:30. How institutions that are supposed to be committed to doing no harm came up with the brilliant idea of waking children who would greatly benefit from rest at 5:30 in the morning to stick them with a needle and draw blood is beyond me.

But now that we are up, FangFang is enjoying one of her favorite benefits of hospital time – virtually unlimited screen time 🙂

She is definitely more herself this morning. She still tells me every 5 minutes or so, “Mommy, I feel sick,” but she is more interested in engaging, more friendly, and chattier with people she deems friendly (yes to her nurse, no to the lab tech who drew her blood).

The pain management team, which I love here, has already come by this morning, and they just turned off FangFang’s epidural. Assuming she does well without it, they’ll pull it, which is the first step in moving us toward going home, a prospect to which we are all looking forward. FangFang has asked about 12 times in the 2 hours she has been awake when she can go home to her brother and sisters. I’m anxious to get home, too. Today is Atticus’s actual birthday, and I’m so sad to be missing it 🙁 Of course it phases him not at all – we celebrated his birthday last week, and when I told him last night that it was his last day of being 2 and then he’d be 3, he told me, “But I am 3 years old, Mom!” Okay, my boy 🙂

Essentially, before we can go, we need to get FangFang transitioned to all oral pain meds, get her next Pamidronate infusion (which can happen after the epidural is pulled), and get her orthopedic surgeons to sign off on discharge. I’m hoping and praying for tomorrow (Thursday) morning. If you’d pray with us to that end, too, I’d appreciate it!

Another Trip to Omaha, Another Surgery

Later today, my mom and FangFang and I are heading to Omaha again in preparation for another surgery for FangFang. This time the plan is to do bilateral tibia rodding – inserting rods into both of her tibias (the main bone between the knee and the ankle). We’d talked with her surgeon last winter and spring, and he’d hoped that once her femurs were rodded, her tibias would do alright on their own, but since then she has fractured both tibias, with one of the fractures being quite significant. With that, the plan has changed. For her to continue to progress safely toward walking and other gross motor skill developments, which she very much wants to do, it will help her tremendously to have her tibias rodded. Those rods will straighten and strengthen her tibias, hopefully preventing them from fracturing so frequently, and when they do fracture, the rods will act as internal splints, lessening the severity and effect of the fractures.

I’m very much looking forward to having the surgery done. I’ll stop holding my breath and hoping not to hear that tell-tale crack every time she pulls herself up to stand on the couch and starts cruising along or scoots herself up into a low chair or tries to go up or down the stairs by herself.

I think it’s going to be safer for her, better for her ability to continue to develop her gross motor skills, and better for how her legs feel for her.

But I am sad that in order to gain all of those things, she has to endure yet another surgery. And we haven’t had great luck with fractures this last month or so. FangFang broke her right humerus just over a week ago.

And then the next day, she hurt her left arm. We weren’t sure whether it was a fracture or not, and she alternated between wanting to use it and wanting to have it splinted, and we have followed her lead on that. She seemed more confident that it was alright yesterday, so we’re hoping that’s a good sign and she’ll continue to be able to use it without issue.

Mostly I’m hoping that she won’t have all 4 limbs incapacitated at the same time. Two arms at once has been really hard, so I’m really hoping her left arm continues to feel alright!

Would you pray for our trip and for her surgery please? You could pray for these specific things –

  • Safe travels to Omaha and back.
  • My kiddos and Matt at home – Miranda, Madeleine CaiQun, and Atticus are staying home with Matt, who still has his regular teaching responsibilities this week, so the kids will be hanging out with various friends for many hours this week. Please pray for them (and for our friends), as this will be far from their normal routine, and pray for Matt, who will be working and parenting on his own for several days.
  • Successful bilateral tibia rodding – that the surgery would go well, that her surgeon would feel confident in the placement of the rods, and that she would have no complications. If you’re feeling particularly ambitious, you could pray that her surgeon is miraculously able to place FD rods, which are the type she has in her femurs, and which expand with the bone as it grows. He thinks her tibias are probably too small, and he’ll likely have to place a different type of rod, which he’d then have to replace sooner, but he still thinks that’s better than no rod. But we’ve heard from other parents that even when he expects not to be able to place FD rods, he’s sometimes able to do so, and that would be amazing.
  • Pain management – The Omaha Children’s Hospital pain management team is great, which is huge in terms of post-op care. Apart from making sure we avoid infection or actual surgical complications, pain management is really the biggest focus after surgery – and it’s a huge factor that plays into my next prayer request…
  • Discharge – We don’t know how long we’ll have to be inpatient after surgery. Assuming there are no complications, once we can get FangFang transitioned to oral pain meds, we should be able to leave and head home, and all of us do so much better here, so I’m hoping we won’t have to be in the hospital very long.
  • Emotional support in the hospital – FangFang is our ever-friendly, always joyful extrovert. But even she has a hard time after surgery. She’s hurting and sad and wants me to hold her and stay within her sight at all times. Please pray that my mom and I can care for her well not only physically but also emotionally.

And, while it feels a bit silly that I’m asking for prayers for myself as my daughter heads into surgery, would you please pray for me, too? I think it’s important to be real and honest about what my life looks like, and for those of you considering adopting a child with special needs, what life parenting a child with special needs looks like. Friends…I’m tired. We’re coming off of a week of hosting my family for Thanksgiving and caring for our 4 children, which is a lot normally, but add to that the fact that one child, for large portions of time, had zero arms available so needed an adult (mostly me) to do nearly everything for her, and I have a cold, and I have not been sleeping enough or sleeping well – it’s a lot. Physically, I’m tired. And beyond that I am emotionally weary. This will be our 4th trip to Omaha and our 3rd surgery in less than a year. I’ll be, again, leaving my other kiddos home while I travel, over Atticus’s birthday, no less, which is so hard on my mama heart. I’m tired from arguing with insurance companies; I’m tired from coordinating to get all the documentation we need for everything we pursue; I’m tired from reassuring jealous siblings who view a trip to the ER as a special “Mom date;” I’m tired from not having gotten to worship with my husband for nearly a year, as one of us is always in FangFang’s and Atticus’s classroom at church; I’m tired from coordinating logistics for all things; I’m tired from the ordinary demands of motherhood and friendship and life in general. I’m just tired. All around, I’m tired. I’m tired as I head into a week in which much will be demanded of me as a mom. Please hear me when I say, this is the life I want. Parents who knowingly adopt kids with special needs sometimes, when they express that things are hard, hear, “Well, isn’t this what you asked for?” Yes, yes it is. This is the life we’ve chosen; this is the life we want; and we wouldn’t trade it for anything. That doesn’t mean it’s always easy. I’m pressing on and persevering in the midst of all we have going on in our lives. I will continue to be the Chaos Coordinator and the Mama Bear that my kids need. But I would so appreciate your prayers for my energy, my stamina, and my heart as I do that.

I’ll keep you updated on how surgery goes and how we’re all doing as I’m able.

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!