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!

Moving Toward Normal

Matt went back to work last week, so while we’re still settling into life and working toward our new “normal,” this was a big step toward that normal. It was an intimidating one! When we came home with FangFang, going from being home with 3 kids by myself a lot of the time to having both Matt and me home with 4 kids felt pretty manageable; I was not sure that transitioning to a lot of time of me being home with 4 kids by myself was going to be the same!

Honestly, overall, it has gone better than I expected!

The hardest part has been the toddler naps (or lack thereof). Matt had been putting the littles down for their naps, and they’d gotten used to that, apparently to the extent that my presence is now a significantly distracting novelty. Last Monday neither little one napped. Tuesday only one napped. But Wednesday and Thursday both napped, and it was glorious! I could work! There was a break for me in the middle of the day. It was so nice. No naps on Friday. Monday of this week both littles napped (but only after a combined 2 hours or so of effort from me), and Tuesday neither napped. That has been incredibly frustrating – not only do I not get to work or get any calm, quiet time during the afternoon, but I spend 60-90 minutes trying to get the littles to do something they’re not going to do, and that’s time I don’t get to spend doing anything else productive, and they don’t nap anyway. Then we’re all grumpy for the rest of the afternoon. I’m really not ready for them to give up naps – but whether I’m ready for it or not, I’m not sure they’ll keep napping regularly for very long. I need to come up with a different strategy for getting in my work hours, and I think I may need a different nap-encouragement strategy, as well. I’ve gotten some advice, and I’m working on it. In the meantime, this is an area in which we could use prayers – for patience, gentleness, and sleep.

We’ve been able to do school every day, which has been really encouraging to me. We’re figuring out what works and what doesn’t. Being intentional about getting out some good toys for the littles makes a huge difference. Often times, trying to do everything in the morning does not work; but neither does saving the most intense stuff for the afternoon. We need to start with math right away and get through it before we move on to anything else. And while the bigs are doing math, I can often read to the littles and get in a little bit of quality time with them before I need to devote my focus to the bigs again. Once math is wrapped up, I give all the kids a little bit of time to play. Then we do Language Arts and “reading school” – Bible, history, geography, and the girls reading out loud. If everyone’s stamina is holding up, we can sometimes get in science, too, but it often works better to leave that for after the littles’ naps. We’re making our way through the curriculum at a pretty good pace, and while I would have loved to have gotten more done before we went to China, I’m generally pretty happy with where we’re at right now and how we’re able to move through it even with everyone home.

science experiment time!
science experiment time!

I’m working on the balancing act of my own household responsibilities and investing in the kiddos beyond school time. Miranda really enjoys games like Backgammon and “the dice game,” a simplified version of Yahtzee that she’d been playing with my dad. Madeleine CaiQun loves reading and snuggling. Both littles are very into almost anything I’ll do with them – building towers and toppling them and snuggling and reading together. Everyone loves it when we pretend they are airplanes and I fly them around. I’m trying to make time for those things.

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At the same time, though, I need to pay bills and keep up with dishes and laundry. Friends from church had been bringing dinners for us a few times a week through last week, which was so helpful, but I’m now back to planning and preparing all of our food. I’m incredibly thankful for all of the meals I prepared and froze last summer and fall – those are going to sustain us through much of this semester, I expect. Matt has also been helping out with all of the necessary household stuff in the evenings.

And in the midst of it all, we’re tackling appointments and evaluations. In the space of 11 days, we’ve had or will have 11 different appointments, procedures, or evaluations – not all for FangFang but many of them for her.

The big girls are convinced that while we're waiting for PT to start, they should be helping FangFang learn to crawl.
The big girls are convinced that while we’re waiting for PT to start, they should be helping FangFang learn to crawl.

I’ve also spent hours filling out paperwork and talking with intake coordinators for various programs and checking items off of our running to-do list with the nurse at our pediatrician’s office. Friends have been kind enough to help out with our kiddos, which I so appreciate, so that I’m not dragging 4 kids with me to every single appointment or procedure. A pretty quick x-ray appointment? We all go. It’s just part of life. However, today’s CT scan for which sedation is required and I need to be able to focus on a 3-year-old who derives major comfort from food and is not allowed to eat for hours before the procedure and whose sedation recovery I’ve never experienced before? I’d like to tackle that one without another 3 kids in tow, thankyouverymuch!

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with all 4 kiddos in the x-ray waiting room

I did leave the house by myself with all 4 kids multiple times last week, an accomplishment of which I was immensely proud! It requires a little bit of planning, but it feels pretty manageable, so I’m thankful for that.

I don’t feel like we’re in any sort of normal rhythm yet. I think we’re tackling everything we need to do in order to move toward that, though, and I have hope that we’ll get there. Of course, we may get there just in time for the end of Matt’s semester, which changes everything again, or for a femur rodding surgery, which will change everything, too, or – please, no! – a femur fracture, which would also change everything, but we’ll work through all of that as it happens. We just keep moving forward, taking one step at a time, and moving toward the goals we hope to reach.

Omaha and Beyond

Our trip to Omaha last week was amazing. We knew going into adopting FangFang that the medical care necessary for a child with osteogenesis imperfecta (OI) would be significant. What a blessing to be able to see a specialist in every single related area all at once!

We arrived on Tuesday night and checked in at Rainbow House, which is right down the street from Omaha’s Children’s Hospital and is where most of the families getting treatment for kids with OI stay. We’d heard good things about it…and there were some good things…but actually our experience there was awful and ended up having repercussions that extended days (and dollars) beyond our stay. That’s all I’m going to say about that now, but we were pretty disappointed.

However, our experience at the hospital itself was great. It would be impossible for me to recommend the OI clinic in Omaha more highly!

Matt took Miranda, Mei Mei, and Atticus out for some adventures on Wednesday morning, and FangFang and I headed to the hospital. First up for her was a dexa scan, which measures bone density.

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Her bone density z-score actually came back at -5, which means the density of her bones is 5 standard deviations below the mean value for children her age – that is a huge difference.

We also did a bunch of x-rays – partly as a baseline, partly to give us more information about a recommended course of treatment now. I was really pleased – everyone was so helpful and easy to work with. I wanted an x-ray of her right humerus, as it had broken last September and felt a little off to me, but that wasn’t included in the standard list of initial x-rays, so the radiology nurses called right away to get an order from the OI clinic for that, so we could do it all at once.

FangFang and I had some time to kill in between appointments so hung out in the cafeteria for a while, about which she was pleased!

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You mean I can choose any snack I want, Mom?!?!

Next up was audiology. She clearly did not share their view that their attempt to look in her ear was a “no ouchie” situation, and after that she was pretty uninterested in their attempts to engage her further. We were able to measure that her ear drums do move, which is a good sign, and we’ll just leave the rest for next year.

Then we were free for the afternoon! Matt and Atticus went back to Rainbow House for naptime, and all 3 of the girls and I went to the hospital playroom for a play date! The online community of OI moms is so incredible, and 3 of us moms had discussed ahead of time the possibility of getting our girls, all with OI, all home from China within the last couple months, together. It was so cool to connect in person!

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The kiddos had fun playing, and we mamas got to chat, which was so nice!

Xiao (on the left) and FangFang were actually both at Agape Family Life House together in China, so they were reconnecting here for the first time since they were adopted! At first they seemed to have some cognitive dissonance seeing each other again in a totally new environment, but as our time went on, they warmed up to each other and were interacting really sweetly.

photo by Xiao's mama, Heather, of Snapshot Photography
photo by Xiao’s mama, Heather, of Snapshot Photography

It was so good to see. FangFang continued to ask about Xiao throughout our time in Omaha. We were so thankful it worked out for us to reunite these two, and we hope they can continue to enjoy this relationship in the years to come!

That evening we were able to reconnect with an old friend from our days in Chicagoland, who is now a professor at a nearby university, and we enjoyed a dinner out with him and his family.

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We really enjoyed that not only was this a trip to get some much needed medical care for FangFang, but we were also able to work in some fun times and connections with friends, both old and new!

Thursday was an early morning as we headed to clinic. We were given a large room (the better to house our large family!), and we settled in there. We just stayed in that same room all morning, and all of the doctors and medical professionals rotated around and came in and talked with us. It was awesome to see so many experts so quickly and easily!

First we met with Dr. Rush, the clinic director, and his team.

photo by FangFang!
photo by FangFang!

Then we saw Dr. Esposito, the world-renowned orthopedic surgeon. We also met with a social worker, a dentist, a physical therapist, an occupational therapist, and several nurses.

We learned so much. We went into this already having a lot of general knowledge but lacking the medical expertise to apply what we were learning to specifically what FangFang’s care would need to be. The doctors there believe that FangFang has Type IV moderate OI, which is what we’d expected. Her right femur shows evidence of having fractured and healed multiple times in the past, and it’s significantly bowed, so it will need to be rodded. Hopefully we can do that surgery before it fractures again, but it would also be great for her bones to be slightly more dense before we attempt it, so we’ll probably wait 4-6 months. That gives this mama a bit of time to prepare for the surgery, too, and try to prepare FangFang as well as possible. We’ll also have her left femur re-rodded at that time. It broke about 8 months ago and was rodded in China, but the rod has migrated a little bit, and that will start to get uncomfortable, so Dr. Esposito is recommending that we take care of both legs at the same time.

After clinic we split up. It was great for both Matt and me to be there and be able to ask questions and meet all of these key players on FangFang’s care team, and all 4 kids did amazingly well, given the expectation that they sit in a small room reasonably quietly for over 4 hours. There were some other things we needed to take care of that afternoon, so Matt took Madeleine CaiQun and Atticus with him to tackle that, and Miranda stayed with FangFang and me at the hospital. FangFang would be getting some bloodwork and her first stateside infusion of Pamidronate, which works to strengthen her bones and help them grow in their density.

Unfortunately, FangFang is not a super easy stick, and no matter how good they are, she is not happy for anyone to be poking at her veins, so that portion of the day was a bit traumatic for her. We got the infusion going, though, and then we were free to wander the halls!

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They had plenty of fun toys in the infusion center, but we hadn’t had lunch yet, so we went off in search of some food. I was so thankful that Miranda had stayed with me. She really has stepped into this role of big-sister-to-3 amazingly well, looking out for FangFang and offering hugs and playfulness and protection. Any time I needed to step away to use the bathroom, I asked a nurse to keep an eye on them, but it was Miranda who really engaged with FangFang and kept her happy.

We actually spent most of the afternoon in the surgery waiting room with Xiao’s parents. It was great to get to chat with them more…and they also helped me out a few times. I joked with Heather that everyone needed a friend who could serve them even while their own daughter was in surgery!

By the end of the day, we were super ready to be done. I hadn’t realized quite how long the whole process of getting the infusion would take, and we were finally discharged that evening about 12 hours after we’d checked in to the hospital that morning. Whew! It was a long day.

Between the reports of the suspected impending ice storm and our unhappiness with things at Rainbow House, we opted to drive home that night, so Matt and the other kiddos picked us up at the hospital when we were ready to go, and away we went, arriving home around 1:00 am.

The kiddos did really, really well with the whole trip, and we were so thankful we were able to get to Omaha so quickly and get such great input from so many experts in the field about how we can best care for FangFang. It was really awesome, and we’re so thankful for that opportunity.

The days ahead are rather daunting, as Matt heads back to work today. It has been such a blessing having him home in these early days as a family of 6, enabling us to have a much smoother transition than I suspect would otherwise have happened. However, he does have to return to teaching, and I’m somewhat intimidated by the prospect of having much longer days at home by myself with all 4 kiddos! Yesterday, a day during which Matt was gone for much longer than he was regularly away for most of winter break, was also a bit rough – I had moments of feeling quite triumphant…but that feeling was quickly squashed when both littles, enamored with the novelty of having Mom put them down for their naps instead of Dad, refused to sleep, rather complicating my plan for the day. We obviously have some kinks to work out. We’ll also be beginning the process of meeting with our local specialists (a local orthopedic surgeon, a PT evaluation, an OT evaluation, a school system evaluation, etc), and we’ll have to see how all of that goes and what the effects on our lives and schedules are going to be! Please pray for us as you are able!

Heading to Omaha This Week!

Later this week we’re packing up and heading to Omaha for their OI clinic! Why, you might ask, would we do that?

When we were reviewing FangFang’s file, before committing to pursuing adopting her, we’d gotten in touch with our pediatrician, who reached out to one of the orthopedic surgeons in the area. He let us know what treatment would generally entail (surgeries and bisphosphonate infusions) and said that care could all be handled locally. And it likely could. So why travel? Why, in fact, change our insurance coverage to a different, likely more expensive plan, solely so that we could travel?

Osteogenesis imperfecta is an extremely rare condition. Approximately 25,000 – 50,000 people in the United States are estimated to be affected with OI – which means that in a country with a population of approximately 324,349,000, less than 0.02% of the population is affected. There is an OI Clinic right here at Mizzou, which, based on the most current data, sees…6 people per year. In contrast, in the same year, the clinic in Omaha saw 176 people. That number is still so low – but it’s almost 30 times higher than the number seen at Mizzou. The doctors involved with the OI Clinic at Omaha Children’s Hospital are recognized internationally as experts in caring for children with OI. Their research relates to OI, they speak at OI conferences, they consult with other doctors, and their expertise shines through when they interact with parents. As we began to research OI and speak with other parents of kids with OI, they almost unanimously recommended making the trip to Omaha and having these doctors involved in our daughter’s care.

Additionally, the clinic has a multidisciplinary approach. In just a couple days, we’ll be able to have FangFang do all the testing that is needed to give her doctors the information they need as they determine the best course for her treatment going forward, and see all of the doctors we need to see. We’ll do x-rays to get a good look at her bones and a DEXA scan to measure bone density. She’ll have an audio test (because our hearing is dependent upon the tiny bones in our ears, people with OI are more likely than others to have hearing issues), and we may do bloodwork and run some genetic tests. Then we will meet with a whole team of doctors and other medical professionals, including an orthopedic surgeon, an endocrinologist, an audiologist, a dentist, a physical therapist, an occupational therapist, a nutritionist, and a social worker, each of whom can speak to some facet of FangFang’s condition and give us insight into how best to care for her.

And this girl? In combination with these doctors? She’s going to kick some OI butt 🙂

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These are going to be some long days, but I am oh-so-thankful for the opportunity to go to this clinic and see these experts. We want to do everything we can to care for FangFang as well as possible, and that means getting her to the OI experts who can best advise us and help us to care for her. We’re excited to meet them, excited to hear their thoughts on a treatment plan for FangFang, and excited to get started doing whatever they recommend!