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.

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!

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!