Post-Surgery and Travel Update

Thank you so much to all of you who prayed us through our travels to Omaha for FangFang’s oral surgery and our return trip back to Missouri!

We left early Thursday morning and made it to the hospital just in time to meet the dentists who would be performing FangFang’s surgery the next day and do our pre-op consultation with them. After that we had the evening to ourselves, so we went and checked into our hotel…

…and then went out to dinner at Block 16, a hipster sandwich shop downtown, which all of us enjoyed! We tried to get FangFang a good last meal with all her teeth 🙂

She went to bed pretty well, and she actually did better than I thought she might with not being able to eat or drink after 8:00 AM. I woke her up around 7:45 to give her a clear liquid breakfast (jello and apple juice were her choices), and then I let her play with an iPad as a distraction while Catherine and I took turns getting some breakfast. We had a 10:00 AM check-in time at the hospital, so the morning was actually reasonably leisurely, and it wasn’t long before we were playing in the hospital playroom with brief breaks to consult with our nurse, a nurse practitioner, the dentists, and the anesthesiologist.

She was pretty happy right up until surgery. I actually declined Versed, and everyone seemed to think that was a good choice, because she seemed so comfortable and happy interacting with everyone, but as soon as she got about 10 feet down the hall from me, she started wailing, and they said I could come back with her. Her oral surgery was taking place in the procedure suite, which apparently has a lower standard of sterility than the OR, so I was allowed to walk into the room with her. I really wish all hospitals would do that for all procedures, whether they’re in the OR or not. FangFang is going to need a number of surgical interventions over her lifetime, and I’d prefer that, as much as possible, she see hospitals as places that help her, as opposed to the locations of traumatic experiences. Nurses seemed very concerned that it might be overwhelming to me to see her go under sedation in preparation for the procedure or have her throat suctioned afterwards, and they didn’t want me to feel uncomfortable. I assured them that I’d witnessed my husband experience cardiac arrest, so nothing they were going to do that day was going to make me uncomfortable, and if I needed to get out of the way, I’d do it. And most importantly, this is about FangFang, not me – if she’s more comfortable with me there, that trumps all else. They let me hold her and sing to her while she went to sleep, and I was so glad.

Catherine and I grabbed some lunch at the hospital cafeteria and then headed back up to our room to wait for FangFang. The dentists came and talked with us and said they’d pulled 5 teeth – the offending back molar that had the deep cavity giving her so much pain and her 4 front teeth, all of which had significant cavities. Because they’d pulled so many, they hadn’t needed to cap any teeth, but the crowding in her mouth will continue to make brushing and flossing a huge priority. They do not believe she has dentinogenesis imperfecta but that it’s more likely that we’re playing catch-up from her years in an orphanage, plus the crowding of her mouth, which is good news, because it means there’s some chance she won’t continue to have such serious dental issues.

It wasn’t long before I was allowed to go back to FangFang in recovery, and I walked in just as she was starting to open her eyes. She was in pain and angry. We got her Tylenol right away, and she wanted to leave that area, so we got to go back to our room right away, but she was still mad. We gave the Tylenol a bit of time to work, but it didn’t seem to be taking the edge off at all, so it wasn’t too long before we requested something stronger, and once she had a dose of Oxycodone, she started to calm. She cried for the mouth pain and cried in hunger and cried from her sore throat every time she had to swallow (she’d been intubated for the procedure). We started gradually introducing some clear liquids – apple juice and water and then jello, and she handled that well (no projectile vomiting!), and just before 4:00 they said we could go!

We weren’t sure how FangFang would do on the car ride home, and I was so thankful to have another adult with me who could help monitor her while we drove. She was pretty content watching Frozen and Daniel Tiger, though, and slept just a bit. She was even happy enough to try on goofy hats at a truck stop where we stopped to give her more pain meds and get gas!

We made it back home just before 11:00 last night, and she was very happy to be back, as was I!

Honestly, the trip itself went pretty well. That was really largely due to Catherine’s presence with us. I so enjoyed getting to chat with her on our drives – it was so much more fun than just driving by myself – and as a mom to four, it almost never happens that I get 10+ hours to hang out with a friend! And she was so helpful in assisting me with everything FangFang needed, getting juice or jello or washcloths to wipe up blood, and entertaining her while I talked with the doctors and dentists. I’m so, so thankful she came – such a blessing and encouragement.

And I’m so glad to be done with the procedure. FangFang was in a fair amount of pain yesterday but seems to be feeling a million times better today. She’s really been in pain for almost a month, and I’m so glad we were able to get this dental work done quickly and be done with it.

Re-entry is always rough, at least for me. I’m so excited to see everyone, but I’m also worn out. I really just want to have some quiet, alone time to read a book and relax. But there’s unpacking to do, and I’m behind on my work week since I was gone for 2 days, and kids need to be fed and cared for, and things at the house are just a little out of sorts any time I return from being gone. It always feels overwhelming to me, and I get snippy. There’s nothing that reveals your selfishness like parenting – and I think that’s doubly true when you add in any special needs. I do feel stretched, and I do feel tired, and I do feel overwhelmed at times, but that’s not a license to be unkind to anyone else, and I definitely fail at living that out.

I’ve tried to spend some time helping everyone settle back in. FangFang and I snuggled and read a book this morning, and a bit later Madeleine CaiQun and I got some one-on-one time reading on the couch together. Miranda and I had some chats, and Atticus came and snuggled with me for a while.

Matt has the kiddos out at a park right now, and I’m hoping to use this time well, doing some catch-up on all the tasks I need to tackle, but also to recharge and be prepared to love well when the rest of the family returns. I spent some time reading my Bible and praying and journaling, which has helped to settle my heart. I’m hoping that when everyone comes home, we can have an evening of enjoying being together, both in cleaning up the house some but also in just spending time together. These people have my heart, and I want to live that out, day by day, moment by moment.

Another Trip to Omaha, Another Surgery

Early tomorrow morning, I’ll load a few more items into our van and take off on a road trip with my newest kiddo. This trip wasn’t entirely anticipated, but it’s necessary.

We knew before we even submitted our Letter of Intent requesting to adopt FangFang that it was likely that she’d have dental issues – dentinogenesis imperfecta is a significant dental condition often associated with osteogenesis imperfecta. Additionally, dental care is often not a priority or even feasible in orphanages. And from day one with FangFang, I’ve known with certainty that she was going to be spending a lot of time with a dentist.

We were working through the process of figuring out exactly what would need to happen and making a plan with our local dentist when the situation became more urgent. FangFang woke up one morning with severe tooth pain, in agony if food even touched one particular tooth that has obvious decay. We got her started on antibiotics and some pain meds right away, but still, she was in a fair amount of pain, and then her cheek started to look swollen. We had to switch her to a stronger antibiotic, and all through that time, we were working with our dentist’s office to determine the best course of action for actually dealing with the offending tooth, as well as some other teeth that are obviously problematic. Our local dentist’s office has been great – in the span of that first painful, sleepless-for-everyone week, I spoke with our dentist’s assistant 5 times and our dentist himself 3 times, including twice on his personal cell phone on a Saturday morning.

One of the things I actually most appreciate about people in general – but especially medical professionals – is a willingness to admit when they don’t know or are not going to be the best person to help you. And our local dentist feels like he’s probably not the best dentist to perform the extensive dental work that FangFang needs during this surgery. That’s a bummer, but we definitely want her to be getting the best care possible, and this is significant oral surgery with some potential complications. The term being thrown around is “total mouth reconstruction.” Add to that the fact that she has OI and that the treatments she receives for OI can change how bone heals, and her local dentist thinks it’s best if a dentist who has more experience doing oral surgery for kids who have OI performs this surgery.

We feel so bad for FangFang – she’s been experiencing tooth pain at varying levels for several weeks now and is about to undergo another surgery. And we’re bummed that it has to happen out of town and right now, right at the beginning of the semester, when Matt can’t take off, and we’re kind of cobbling together support to make the trip and the surgery possible, but this is what we need to do, so we’re doing all we can to make it happen.

Matt will stay here with Miranda, Madeleine CaiQun, and Atticus while FangFang and I make the trip to Omaha. I  had been dreading this trip, both because it would be yet another surgical intervention for my child and because I’d need to do it alone. I love road trips with Matt or with friends, but I really dislike them when I don’t have other adults with me and have to do all the driving and keep myself entertained and awake the whole time. That feeling is intensified when contemplating a road trip with myself as the sole adult with a rear-facing toddler, who, for the drive home, will be just recently post-op. I’d stocked up on road trip snacks, and I’d been praying that God would sustain me for the trip, that He’d help me make it through those drives safely.

But because we serve a God who sometimes comes through for us in ways that are beyond what we are expecting or even hoping for, I now have a friend who is going to travel with us! Last night was our church missional community group meeting, and my friend Catherine – whom FangFang loves – happened to mention that this is her “off” week in her 7-days-on-7-days-off work schedule. It occurred to me once we got home that maybe, just maybe, she’d want to join me for a road trip to Omaha, so I sent her a message, and she said the idea had actually occurred to her, too, and she’d love to come along us! That eases so many of my worries about the trip. I could do it myself, but it’ll be so much easier and so much more enjoyable to have a friend along!

I still expect these next few days are going to be pretty intense, but we’re doing what needs to happen to get FangFang all of the care that she needs, and that’s obviously important. Would you pray for all of us during this time? Here are some specific ways in which you could pray –

  • Please pray for FangFang and Catherine and me as we travel. Please pray for our safety as we drive and for us to make good time, as we’re shooting for an on-time arrival for our afternoon pre-op appointment tomorrow.
  • Please pray for Matt and our kiddos who are staying here. It’s a departure from routine and a lot of time without their mama for my kiddos who are used to being with me. I’ll miss them a ton, and I know they’ll miss FangFang and me, too. A friend is helping out in caring for them some, but it will still be a lot of solo parenting for Matt, who is also getting back into the groove of teaching.
  • Please pray that FangFang does alright with the restrictions on her food and drink intake prior to surgery. For kiddos who have experienced food insecurity, this is so tough.
  • Please pray for our sleep on Thursday night. Friday is going to be a big day, and it would be ideal for us to be well-rested heading into it.
  • Please pray that all goes well with the surgery itself – that the dentist makes wise decisions about exactly what needs to happen (with 3-year-olds, for whom it’s nearly impossible to get high quality x-rays until they’re sedated, some of the final decisions don’t happen until surgery), that everything goes smoothly, and that the work they do will ultimately give FangFang relief and protect her remaining baby teeth for as long as they need to last.
  • Please pray for her post-op recovery. After her last surgery, she was pretty sad and wanted a lot of food and drink, which ultimately led to several instances of projectile vomiting, but then rest. Pray for me to have wisdom about what food and drink to give her and how to care for her, and pray for everyone to be gentle and supportive in caring for her after surgery and to do what she needs. Please pray also for wisdom for everyone in determining when she’ll be discharged. This should be an outpatient procedure, but discharge timing all depends on her post-op recovery.
  • Please pray for pain management. The team I’ve been talking with has said that kiddos are actually often in less pain after a surgery like this, which has been precipitated by tooth pain, than what they’d been living with prior to surgical intervention. I’m hoping that’s the case, but we don’t really know how everything will go for FangFang, and I want her to be comfortable as she recovers.
  • Please pray for our travels back home. I’m really hoping for less vomiting and just a straight transition to the groggy restfulness after surgery. If all goes as planned, we’ll probably be discharged around 4:00 pm, and from there, we can just drive home, but we’ll still have a reasonably long drive ahead of us, especially with a kiddo who just came out of anesthesia and may be in some pain.

Thank you, friends. I’ll keep you posted as I’m able!

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!

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.

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!