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!

First Fracture? Yeah, Probably.

I was planning to write about something else today…but I think I should share about this instead. As a pre-adoptive mama to a precious little girl with osteogenesis imperfecta (OI), I did my homework. I talked to doctors, and I talked to other mamas. I prepared and traveled to China with a break box (a box of medicines and splinting supplies that would allow me to care for any fracture at any time). But I hoped I wouldn’t need it – not for a long time, definitely not while we were in China, and hopefully not until after our first trip to see the specialists at the OI clinic in Omaha. And I prepared myself mentally for the drama of it all. I’m not a stranger to medical trauma and the necessity of sometimes keeping a cool head, doing what needs to be done, and leaving the feelings for later. I knew it could still be tough, though – imagine a three-year-old fracturing their femur. Not all fractures are severe, but some are, and the probability of a severe fracture in a child with OI is significant.

We made it through China with no fractures, and I breathed a sigh of relief, and with our appointment in Omaha approaching, I was hopeful we’d make it until then without any breaks to any of FangFang’s bones. Alas, it was not to be. I’m pretty sure we’ve got our first fracture on our hands.

Remember that toy car FangFang so desperately wanted and was so thrilled to have?

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Well, she and it may have been involved in a collision with the other toy car last night. I knew that was a possibility when I ordered the car, and it did give me pause. However, what I’ve taken away from conversations with people with OI and mamas to kids with OI is that most of them would prefer to be allowed to play and have fun and risk the fractures, rather than being isolated and protected in a bubble.

After the crash, she cried and reached for me, and I held her and comforted her. We asked her if she had an owie, and she pointed at her lower leg, and once she calmed, Matt and I took a look at it. She let us look at and feel it, and she never winced as we palpated it. She sat on my lap and laughed at her siblings’ playing, and she saw her pajamas on the couch and asked to take off her clothes and put on the pajamas and didn’t have any strong reaction to pants going off or coming on. But she didn’t want me to put her down and did point at her leg a couple times. I checked in with another mama to a kiddo with OI, and her assessment from afar was that it was definitely not severely fractured but that it could be a micro-fracture or a slight crack, something that might not even show up on x-rays for a week or two until a callus has formed – or it could just be a normal bruise like any other child might get. If it were bad, we’d know, and we should probably try to make sure we didn’t let her do anything to further aggravate any injury there but otherwise just watch and see how she was doing. That’s what we did, and we had a normal bedtime routine, and she slept through the night just fine!

This morning she seemed a little off, though. She seemed a bit nervous to take off her pajamas, and instead of whipping her legs up in the air for her diaper change and then sliding them into her pants legs, she was picking up that leg with her hands. She’d say, “Mama,” and point to the same part of her leg that she’d been indicating last night. She was also asking for me to rub lotion on it. Poor girl, I think she may have thought that was the entirety of my repertoire for making things feel better! But she clearly felt like there was something going on that needed care. So…back to my OI mama friend I went, and her response this morning was that it really sounded like a minor fracture. That’s what I’d been thinking more and more, as well, and our leaning in that direction was strengthened when, as I was discussing the situation with my friend, FangFang began to attempt to splint the leg herself! Wow.

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I gave FangFang some Ibuprofen and talked through our options for our next steps with my friend and decided to take care of this one at home. We could have gone in for x-rays, either through the emergency room or calling the doctor who will probably be her local ortho, but there’s a good chance a small fracture wouldn’t have shown up on x-rays at this point anyway. Additionally, whether it did or not, it seemed clear FangFang’s leg needed a splint – for kids with OI, as my friend said, “If it quacks like a duck, then it is a duck, meaning if it seems like a fracture it’s probably a fracture,” and you need to treat it as such. I could do a splint quickly and easily at home, though. Beyond that, the biggest help doctors can offer is a prescription for stronger pain meds, but this one seems like it should be manageable with Tylenol and Ibuprofen. Plus she’s going to have a comprehensive set of x-rays next week in Omaha, and she’s going to be exposed to enough radiation in her life that I don’t feel the need to have a double exposure here in a situation where the x-ray would give us no necessary information.

We pulled out our break box and set to work on our first real splint.

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One blessing is that she’s already had her femur rodded in this leg, so we don’t have to do as significant of a splint. I believe the likely fracture is in her tibia, so the joints above and below need to be immobilized. For a non-rodded femur, we wouldn’t be able to stop the splint anywhere along her upper leg, though, or we’d be creating a site at high risk for a femur fracture, so we’d have to splint up past her waist. Thankfully, in this situation we can just splint through mid-thigh.

(For you OI mamas out there, her foot actually is at close to a 90 degree angle here; it just doesn't look like it because of the awkward angle of the photo!)
(For you OI mamas out there, her foot actually is at close to a 90 degree angle here; it just doesn’t look like it because of the angle of the photo!)

And here she is, all set and back to her usual happy self 🙂

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She seems slightly annoyed by the fact that the splint’s bulkiness and weight makes it a little harder for her to move around, but I’d rather face a bit of annoyance than a more significant tibia fracture! Overall she really seems completely fine, and I’m so happy about that! First likely fracture down with minimal trauma and with a cool bright blue splint of her choice! Now we’ll just hope we can make it to Omaha before we have any more significant trauma 🙂

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

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

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

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

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

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

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

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

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

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

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

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

It’s Starting to Get Real – Some Travel Plans (and a Huge Prayer Request)

Since our Travel Approval (TA) was issued on Monday, my life has consisted almost entirely of staring at many browser windows, each containing many tabs, each containing a possible flight itinerary for getting us to and from China, plus a chat with a travel aficionado friend who was helping me look at our options, and then multiple phone calls and e-mails with our travel agent, our agency, and my brother and sister-in-law, who are traveling with me. It was all, to put it mildly, rather exhausting.

BUT we received our first choice Consulate Appointment date (12/20), and we now have our international travel tickets! I still need to arrange the domestic side of things, but that will hopefully come together this week, as well. The international piece was really more pressing. Here’s our working draft of our schedule!

  • Wednesday 12/07: Madeleine CaiQun and I will fly from St. Louis or Kansas City to Newark
  • Thursday 12/08: Madeleine CaiQun, my brother, my sister-in-law, and I will fly from Newark to Hong Kong
  • Friday and Saturday 12/09 – 12/10: We’ll spend these days acclimating to the time change and doing a bit of sightseeing in Hong Kong
  • Sunday 12/11: We’ll travel from Hong Kong to Nanning, the capital city of Guangxi, which is the province that our little Fang Fang is from and where her adoption will be finalized
  • Monday 12/12: Family Day! We will take custody of our girl <3
  • Tuesday 12/13: Adoption Day, when her adoption will be finalized
  • Wednesday and Thursday 12/14 – 12/15: We’ll be in Nanning waiting for Fang Fang’s passport to be processed. Depending on how we’re all doing, we may go to her city and request to visit her orphanage.
  • Friday 12/16: We’ll travel to Guangzhou, where the US Consulate is
  • Saturday 12/17: We’ll have Fang Fang’s immigration medical exam
  • Sunday – Monday 12/18 – 12/19: Free days in Guangzhou while we wait for the results of Fang Fang’s medical exam to be ready
  • Tuesday 12/20: Consulate appointment at the US Consulate in Guangzhou
  • Wednesday 12/21: If all goes according to plan, we should receive Fang Fang’s visa
  • Thursday 12/22: Travel from Guangzhou to Hong Kong and take a flight out of Hong Kong that evening back to Newark, arriving around 9:00 PM and spending the night in a hotel in Newark
  •  Friday 12/23: Madeleine CaiQun, Fang Fang, and I will fly back to St. Louis or Kansas City (probably with my dad flying with us to help – I’m not sure it would be wise for me to tackle that flight by myself with 2 exhausted kids in tow!)

I am so thrilled to be DONE looking at international flights. Because we have multiple people coming from multiple locations but wanting to converge before the international flights, and because we’re booking tickets reasonably close to when we’ll travel, and because we had flexibility in some things but definitely some preferences and no flexibility in other areas, it was pretty complex. And then there was some gymnastics involved in getting the actual best fares – in order to save about $1200, we have 4 of us booked on Cathay Pacific and one on American Airlines (but for the same flight) and 4 standard Travel Agent tickets and 1 direct buy ticket. It’s pretty crazy. Adoption Airfare was super helpful in working through all of it with me, though!

And now that we have more definite dates, we can get to work on planning the travel specifics and doing little things like packing 🙂

I’ll have a post soon with a whole list of prayer requests for our journey, but in the meantime, I have a pretty urgent prayer request. Fang Fang is, right now, at an amazing foster home that specializes in caring for children with osteogenesis imperfecta (OI). Apart from a perfect world in which she could still be with her first family, this foster home is absolutely the best place she could be in China. However, her orphanage retains legal custody of her, and it is often the practice in China for kids to return to their orphanages after their families receive TA. Because of the difficulties inherent in caring for children with OI and because of the relationships our daughter’s foster home has generally been able to cultivate with the orphanages from which their children come, kids have usually been able to remain with the foster home right up until their families arrive. For so many reasons, this is so much better for the kids. We had assumed this would be the case for Fang Fang, but I got a message this morning that her orphanage is wanting her to return and does not seem to be receptive to the idea of her remaining at her foster home until we arrive. My heart is hurting at the thought of our sweet girl having to face yet another loss and yet another transition in her short life. The foster home is still in discussions with the orphanage, so there is still hope that she could stay there until we arrive. Please pray that the orphanage allows this. And, in the event that they would say no, please pray that she could stay as long as possible. Would you please pray with us for these things? We’d so appreciate it. I’ll keep you informed.