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.

IMG_0002

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!

IMG_1015
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.

IMG_5023

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!

IMG_5031
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!

IMG_5038

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.

IMG_5046

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!

IMG_5074

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!

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?

img_4985

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.

img_5013

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.

img_5017

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 🙂

img_5020

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 🙂