Our First Major Fracture

We’ve known all along that FangFang’s osteogenesis imperfecta would mean that she’d be highly susceptible to bone fractures, and we were a bit relieved when, in January, we experienced what we believe was her first fracture since coming home. We made it through that and breathed a sigh of relief! It was relatively mild, though – we weren’t even sure anything was going on until the morning after it happened. And honestly, it made this OI mama gig seem pretty easy!

But this week we had our first real, major fracture. FangFang’s newest skill, of which she is immensely proud, is that she can go up and down the stairs by herself. She sits on her bottom and scoots herself up or down one stair at a time, and while I wouldn’t let her do it totally unsupervised, she’s been pretty consistently safe.

We invited some friends to come over for a low-key hangout to celebrate the 4th of July, and while they were here, FangFang was going from me (upstairs) to Matt (downstairs in the studio), and as she was scooting from one step to the next, I heard a crack, and then she started crying very loudly. FangFang has a flair for the dramatic, so it wasn’t as much the intensity of her cry that alerted me to the fact that this was something serious, but rather its persistence and her self-splinting of her leg (positioning her other foot underneath it) to protect it. I scooped her up right away and carried her upstairs and offered a bit of comfort and had Matt go get our break box from upstairs.

We gave her the heavy duty pain meds that we keep on hand for these exact situations and splinted her leg. Nothing looked displaced, and the 4th of July is probably one of the dates on which I would least like to go to the Emergency Room – I am pretty uninterested in spending the evening competing for medical care with people who have experienced fireworks accidents, and I’d rather we not be the guinea pig for the new residents. We opted to medicate and splint at home, knowing we’d call the orthopedic surgeon in the morning to try to get some x-rays to make sure additional treatment wasn’t warranted. There was quite a bit of crying, but we got her splinted and calmed down and set up watching tv.

Then it wasn’t long before, thanks to the intense meds, she slept for a couple hours before waking up in pain again. I felt so bad for her – at that point, I really could only give her Tylenol and Ibuprofen, nothing more yet, and she was clearly in a lot of pain. I texted and then even called another OI mama and asked her what I should do. She said this really just is how it goes with this sort of fracture, that there wouldn’t be much more they could do at the ER, and we needed to stay on top of pain meds and just do all we could to keep her distracted. She was a lot happier once we gave her an iPad she could control herself (she likes to switch videos every 7 seconds or so!) instead of just putting one show on the tv. We were so thankful that something helped!

Thanks to her nap, she stayed up fairly late that night, and thanks to the intense pain meds, she was a little loopy, chatting with Matt and me about all sorts of topics!

We brought down a travel cot for her, so she’d be a little more comfortable without us having to carry her all the way up the stairs and jostle her getting her into and out of her crib, and I slept on the living room couch next to her, so I could be nearby if she needed me and could also stay on top of pain meds during the night.

She spent most of the next morning with my iPad. With a good pain med schedule, no movement, and an iPad, she was reasonably comfortable, but without any of those things, she was in quite a bit of pain. That meant that going to the ortho for x-rays that morning was pretty agonizing for her. I put her in her stroller once we arrived to minimize the amount of moving of her leg I’d need to be doing, but we still needed to move her to get x-rays and then to re-splint.

The x-rays confirmed what I’d suspected, a significant tibia fracture. They also showed what I’d hoped for, though, that there was no displacement and no treatment needed beyond splinting.

The nurse practitioner started removing the splint I’d put on before I realized what was happening – I haven’t quite mastered the OI mom skill of (1) comforting your hurting, crying child while (2) talking to medical professionals and (3) monitoring all medical professionals in the room to make sure they’re not doing anything you don’t want them to do. Truthfully, it wasn’t the greatest splint, and I knew it wasn’t great, but we’d been trying to get it on and stable while FangFang was in a huge amount of pain, so I was satisfied that it met the basic criterion of immobilizing the joints above and below, and I figured I’d re-splint with a better one in a few days once the pain went down. But once it was already off, I agreed that we might as well put on a better one. I was nervous about not doing it totally myself – we’ve heard some horror stories about medical professionals not understanding how to work with kids with OI bone – but I was actually very impressed with the guy who does the casting and splinting at our orthopedic surgeon’s office. He and I worked together to put on a new splint with minimal trauma to FangFang, though she still hated it, but now we’re all set for a few weeks.

For FangFang, Wednesday was really a day comprised almost entirely of lying on her little cot and watching videos on my iPad.

That prompted some jealousy, and some older siblings may have confessed to stomping their feet on the floor as hard as possible in attempts to break their own legs and get extra tv time. Technology envy is alive and well at our house 🙂

Thankfully – for everyone’s sake! – FangFang was feeling much better by yesterday. She got off her cot and started scooting herself around again, she played with siblings, we were able to wean down to just Tylenol and Ibuprofen, and she was so much more herself.

I’m still pretty bummed about the fracture – sad for FangFang that it had to happen at all and sad about the timing of it. Though it was nice at times to have some extra adults around, there are many ways in which it’s not ideal to fracture your leg in the midst of a party at your house! And my big girls were bummed to miss out on going to fireworks on the 4th. It’s also the beginning of July – basically the middle of summer around here – and I so love getting to take everyone to the pool, and while technically I could let her get her splint wet and then just re-splint with a new one afterwards, we won’t want to take this one off for at least a week and a half, so she – and we – will miss out on some pool time. But ultimately I’m thankful she’s doing so well now, and I’m thankful it wasn’t any worse than it is!

Summer Reading

One of the greatest challenges for me, during this stage of life in which I have a good number of fairly small children, is in balancing all of my primary roles and responsibilities. Being a wife and a mom can, even on a good day, threaten to overwhelm all else. Yet I know that it is crucial for me to have time to think, to pray, to reflect, and to be a person in my own right.

Something I’ve always enjoyed is reading books. I love both non-fiction and fiction, the former offering countless opportunities for learning and the latter providing a glimpse into the minds and hearts of other people and thereby helping to expand my own. And while I’ve never entirely stopped reading, it’s been something that has ebbed and flowed, generally in inverse proportion to the demands of my children.

I really started making reading a priority again this past spring. Before we went to Omaha for FangFang’s surgery, I’d solicited book recommendations from friends on Facebook and received quite a few and downloaded several into my Kindle app. That was fortunate, since she spent much of her time in the hospital sitting on my lap, often sleeping, and I could do little besides read.

I’ve discovered in the last few months that I really do retain non-fiction better if I read it in actual book form, so I’ve been sticking to that, but I’ve been borrowing fiction books from the library through Overdrive to read on my Kindle app (and occasionally purchasing books from Amazon, as well). I’ve actually put the Kindle app on my phone, and I’ve read so many books that way over the last couple months. It’s not really my preference, but I always have my phone with me, so I’m able to pull it out and read for a few minutes while waiting for water to boil when I’m cooking or sit and read while waiting in the bathroom with a potty-training toddler. And a side benefit is that I’m less tempted to look at Facebook 50 times a day when I have something else interesting I can pull up on my phone instead!

As far as serious non-fiction, I greatly enjoyed reading Hannah Anderson’s Humble Roots: How Humility Grounds and Nourishes Your Soul, and I even got to go to a book discussion evening with some other ladies to talk about it. I’ve been wanting to grow in humility, and this book was a great encouragement to me. I’ve also been reading Raising a Sensory Smart Child, by Lindsey Biel and Nancy Peske. It has given me some good information as I’ve been learning more about sensory processing and about ways in which our body’s sensory-seeking or sensory-avoiding tendencies can affect our lives and how we can use that information to make good choices for ourselves and our children. After finishing Humble Roots, I started reading Mike Wilkerson’s Redemption: Freed by Jesus from the Idols We Worship and the Wounds We Carry and am looking forward to digging into it more as I prepare for some upcoming ministry opportunities with our church. Next up after that is going to be David Powlison’s new book, How Does Sanctification Work?. David Powlison is my favorite Christian writer and speaker, and I’m really looking forward to reading what he has written. I’m hoping also to get into Praying Together, by Megan Hill, which a lot of the people from our church are reading this summer.

Matt and I have been consistent in our reading together – since our dating days, we’ve always read books together, sometimes both of us reading the same book separately and then discussing it, more often reading out loud to each other. In recent years we’ve been going through sagas – we read almost all of Madeleine L’Engle’s fiction, then read through Harry Potter, and we just finished The Lord of the Rings. The other day we started Dirk Gentley’s Holistic Detective Agency, my first Douglas Adams book, which, so far, is odd – I’m looking forward to seeing what I think of it after we get into it a bit more, since so many good friends have such a love for Douglas Adams!

I’ve really enjoyed being able to venture beyond our reading together into copious amounts of fiction reading on my own, though, sprinkling in some heavier reads among a lot of lighter, happier books. I read two excellent World War II era books: The Nightingale, which crushed me; and The Guernsey Literary and Potato Peel Society, which at first I thought I wouldn’t like, due to its form of story-telling via letters between various characters, but which I ended up loving. I also loved Wonder, an adolescent fiction novel, which is beautiful and definitely a tear-jerker. My children will be reading all of those books as they reach ages at which they’d be appropriate!

I read some Nelson DeMille books, which were generally good stories, but most of his main characters just annoyed me, so I couldn’t truly enjoy immersing myself in them. But the only book I actually stopped reading before I finished was The Handmaid’s Tale. I may come back to it someday, but I found myself far too creeped out by its dystopian world. I was having weird dreams about it at night and having a hard time jumping back and forth between its world (while I cooked dinner) and my own (as children invariably came into the kitchen to make one request or another). While they’re lighter and probably less respectable as literature, I’ve enjoyed much more the thoughtful, engaging novels of Sara Donati and Christa Parrish. At another time, I might have pushed through the Handmaid’s Tale, because I feel like it’s a book I should be able to say I’ve read, but I’m learning that, just as I parent each child according to what they need at any particular moment, it’s a good idea to pay attention to what I need and want at various times. Right now I don’t need the harsh creepiness but am very encouraged by good, thoughtful stories, and I’m okay with that!

I’m so thankful to be able to grab even a few minutes here and there to do some more reading these days. I’d love any book recommendations you readers may have, as I’m always looking for more good books to read!

Post-Heart Attack Life

Life happens in layers, I think, each action and each event having far-reaching implications, many of which are not known until months or years later. We spent the months after Matt’s heart attack (if you haven’t read the story, see here for parts one, two, three, four, and the aftermath) focusing on making the necessary changes to our lives. Matt is on medication and sees his cardiologist regularly, and he began exercising, first every other day, and then every day, and we completely transformed our diet. We’re always tweaking things, and Matt is continuing to try to lose weight, but, for the most part, things have been pretty stable.

But one night in May, I came home from an evening of hanging out with other women as part of our church’s women’s retreat, and Matt told me he felt off. As I asked more questions, he said he wasn’t sure what it was, but he’d been outside that day and gotten sunburnt, and he’d used some different exercise equipment at the gym, and he was sure that’s all it was, but his chest had felt a little weird. Just to be safe, though, since he was home alone with all four of our kids, he’d taken some meds. Alarm bells immediately went off in my mind. He was sure it was nothing – but he hadn’t really thought that the chest pain he’d experienced in the couple days prior to his heart attack warranted more attention than an aspirin.

By this time it was getting late, but I’d just been chatting with a nurse friend at the women’s event, so I was sure she’d be awake, and I called and got her opinion – which was that if this was anyone else, she’d say it was probably no big deal, but with Matt’s history, we needed to check in with his doctor. We are so blessed to have, as Matt’s primary care doctor, a friend from church. I texted him and asked him to call me if he was awake, because we had a question about Matt’s health, and he called within five minutes. After talking with Matt, he advised him to head to the ER – that it was probably nothing, but better safe than sorry. Matt said he didn’t want to turn it into a big deal by having someone else come here and watch our kids or having someone come and get him, so he drove himself in, while I stayed at home with our kids.

And honestly, it was an emotional night. I was relieved when, by 2:00 a.m., he texted me to say that bloodwork was showing that his troponin levels were normal and an EKG showed nothing out of the ordinary. He stayed for another round of bloodwork 4 hours later and then, when all looked okay, came home to get a few hours of rest and then to hang out with our kiddos, so that I could go in to speak at day two of our women’s retreat. Interestingly enough, for a portion of my talk I was using as examples some of our experiences after Matt’s heart attack, so my mind and my heart were already steeped in some of the counsel I’d received then.

Most poignant among all of it was and continues to be, “Enjoy your time together, it is a gift. Use this time to draw close to God and Matt.”

After Matt’s heart attack, I hadn’t realized that I was afraid to draw nearer to him in our relationship until my friend spoke those words to me. Even knowing that our time together might have a hard stop years before we’d dreamed it could, we were and are called to this marriage relationship together, and I realized then and I know now that I cannot take him to have and to hold, to love and to cherish – as I stood in front of our family and friends 14 years ago and promised to do – if I’m holding him at a distance. And so I push fear away and draw near to him.

I’ve been thinking about Philippians 4:4-8 lately – “Rejoice in the Lord always; again I will say, rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding will guard your hearts and your minds in Christ Jesus. Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.”

These are hard verses in that they do not promise what I wish that they promised. They don’t say, “Don’t be anxious, because if you pray, God will give you what you want.” They tell us not to be anxious, and they tell us to pray, but what is promised is not the desired result but peace. What I’d like is a guarantee of long life and love, but try as I might, I’ve found that nowhere.

But I contemplate a God who is true, a God who is honorable, a God who is just, a God who is pure, a God who is lovely, a God who is commendable, a God who is excellent, a God who is worthy of praise. I trust that He is sovereign and that He is good and that this life that He has given to me and is giving to me is the one He laid out for me to have, and He will walk with me through it.

I don’t always feel peace. Matt and I are watching through the first season of This is Us right now. We just watched the Christmas episode, in which Toby collapses, and I felt my breath catch in my throat and my heart pound in my chest. I know that panic, and I know those hospital beeps. I know that there’s no guarantee they will stay at bay for years or even days to come.

And yet there is an undercurrent of peace throughout our lives. I choose to trust myself to the God of the universe and throw myself into this life He’s given to me. I expect there will be more ER trips in the future. That’s something that, 15 months ago, it didn’t occur to me to anticipate as part of this new reality, but I know now to expect it. If you experience cardiac arrest at age 39, chest pain earns you a trip to the ER to be checked out, and it’s going to happen, though I hope it’ll be infrequent.

But as long as we’re here together on this earth, living this life, we’ll press on and try to use the days that we have well.

Meet Keena, Jefferson, and Rosie

As you’re likely aware if we are friends on Facebook or you follow me on Instagram, our family has recently grown again! Meet Keena, Jefferson, and Rosie!

from left to right, Jefferson, Rosie, and Keena

It was a bit of a journey to get them. It started when I arrived home from our church’s women’s retreat the first weekend of May to an excited announcement from the kids that there were cats in our yard! Apparently, as they’d been playing outside, they’d seen a mama cat and kittens who seemed to be living under our sunroom in the back yard. After soliciting advice on Facebook from our cat-expert friends, we decided we’d try to get them to warm up to us, so we could trap them and take them to get spayed and neutered, and we’d try to find good homes for them. And after some discussion between Matt and me, we told the kids that we could probably keep two of the kittens.

Actually, years ago, when people would ask if we had any pets, we’d look at them like they were crazy and respond that when we had the time, energy, and money to devote to another being, we’d have babies – and so we did. But now, four babies later, we think our family has all the kiddos it’s going to have. And we’ve seen the positive ways in which our children have responded to animals. And while having pets does complicate travel and does add additional responsibilities within our home, we’ve talked with friends who are cat-owners, and we’ve come to believe that adding cats to our family could be manageable.

Thus began our brief attempts to tame the cats in our back yard. We put out some soft food, which mama cat and the kittens began to eat.

I stood outside while mama cat ate, trying to get her used to my presence, so I could hopefully get close enough in the days that would follow to trap her and her kittens. Unfortunately, my presence had the opposite effect – it seems I spooked her, and we’re pretty sure that mama cat moved her little family elsewhere. We saw her a few times – always at a distance and never when we were outside – after that, but we haven’t seen the kittens since.

Our kiddos were pretty bummed and began carrying around the cat carrier we’d purchased, just practicing for the day when we could get cats for real.

After a couple days of no kitten sightings, I began researching our options for getting cats, and we decided that for our family, the ideal situation really would be to bring home some kittens. It’s definitely harder to find families for older cats…but it’s also harder for older cats to adjust to a family with many young, active children. And after reading and talking with friends about the benefits of having multiple cats, we decided we’d try to bring home 2 kittens.

Because we are us, and once a decision is made, we move, we went out that afternoon and met and played with some kittens, and that evening, we welcomed Keena and Jefferson into our family!

There was just one problem…Keena and Jefferson were part of a litter of 3 cats. I am quite sentimental, and I couldn’t stop thinking about and feeling bad for the 1 cat we’d left behind, and neither could our big girls. That night I talked to Matt, and the next afternoon I loaded the kids up into the car, and we went back to get our third kitten, now named Rosie, before anyone else could come and get her.

They are very playful!

And Madeleine CaiQun does a great job of playing with them!

But as all kittens do, they also require a great deal of sleep, which is quite adorable 🙂

We’re finding that our hypothesis is probably correct, that it’s best for our family, with our many young children, to have kittens. Atticus, in particular, requires a lot of coaching about how to treat cats with kindness and gentleness, but all of the kittens are pretty tolerant even of him!

The cats have been great snuggling companions for everyone, which has been a blessing. Everyone needs to know that they are unconditionally loved and accepted, and while Matt and I do our best to communicate our love and acceptance to all of our children, we understand that there’s also a lot of teaching and discipline in our relationships with our kids. At more difficult times, the predominant emotional sense our kids have of our relationship may not be positive, and they may not be able to receive a lot of affection from us – but the kittens will curl up on their laps and allow themselves to be petted, all the while emitting motor-like purrs of satisfaction and approval, which is so encouraging and helpful for all of our kiddos. Curling up with a kitten has definitely become another strategy in our toolbox for helping dysregulated children.

Bringing kittens into the family has added some expense and some work and a few more appointments to our lives, but overall it has been a very positive experience, and we’re glad we’ve embarked upon this journey of pet ownership!

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!