One Year with FangFang

This week we celebrated one year of life with FangFang! It has beenย quite a year. She was not a fan of us (of me, in particular) at first, and candy was my biggest ally.

But even on that first trip, in China, we saw glimpses of the joy that we now know permeates her heart and soul.

These first kisses were so precious to me.

And she warmed up to Matt pretty quickly once we were home ๐Ÿ™‚

It has been quite a year since then. We’ve traveled to Omaha 4 times for 1 clinic visit and 3 surgeries…and we hope not to head back until the middle of next year!

While FangFang still uses butt-scooting as her primary form of mobility at home, she’s also learned to crawl and stand and even cruises on the couch! And, after some fighting with the insurance company, she got her first wheelchair for increased mobility in public places.

And beyond all these skills, we’ve grown as a family. Any time a new person joins a family, all of the family dynamics change, and it takes time to make those adjustments. We’re still figuring out all of these relationships ourselves and coaching our children through them – I expect that will remain true forever ๐Ÿ™‚ But it feels like every member of the family is more settled, and we’ve grown into pretty stable, positive places!

FangFang was excited to celebrate being part of the family for a whole year, and we were happy to go along with her requests for Chinese food and ice cream ๐Ÿ™‚ FangFang is passionate about all things China, but really, one thing everyone in the family can agree on is Chinese food! Atticus had a hard time leaving the park Matt had taken the kids to visit that afternoon, and Madeleine CaiQun comforted him by telling him, “It’s okay, Atticus, we’re going to have Chinese food for dinner!”

FangFang, you are a true source of joy, and we are so glad you are home and part of our family <3

 

Home and Recovering Well!

Those of you who follow me on Facebook or Instagram are likely already aware, but my last update here was from the morning after surgery, so we’re overdue for a post here!

FangFang’s pain remained under control with oral pain meds throughout the day on Wednesday, and we were able to get her Pamidronate infusion that afternoon, so we were discharged from the hospital reasonably early Thursday morning! We so appreciate everyone who is a part of FangFang’s care team in Omaha, but it isย so good to get out of the hospital. FangFang is so much more herself, and if I can handle everything she needs at home, this is a much better place for her to continue to heal and recover.ย We made it home Thursday evening, and it was a huge relief to be back together as a family again.

It’s interesting, though – re-entry is always hard. Or maybe that’s just my family? ๐Ÿ˜‰ I doubt it. Kids are perceptive. FangFang obviously needs extra care and attention after surgery, but my kids who stayed at home had also been away from me for 3 days, and they crave reassurance that they matter, too. Thursday evening was full of not a few meltdowns ๐Ÿ™‚ But we made it through!

My mom stayed through Friday, and we had a low key day at home. Honestly, a lot of it looked like this – kids sprawled out on various chairs and couches and on the floor, watching tv.

My aunt and uncle sent some Ni Hao Kai Lan DVDs, and it has been nice to have something new for everyone to enjoy! We have some pretty consistent screen time limits at our house, but the reality is that FangFang currently has 3 limbs immobilized, which makes many activities difficult, if not impossible. We’ve been doing a bit more screen time than usual, and I think that’s entirely appropriate, all things considered.

But we’ve also been easing back into our normal routines. We took 2 weeks off of school while we had family in town for Thanksgiving and then while FangFang and my mom and I went to Omaha for surgery, and it’s always a bit difficult getting back into the groove after a long break. I’ve kept expectations low, and I planned for us to make a truly slow transition, and it’s been going alright ๐Ÿ™‚ It takes a lot of work and consistency from me, but we’re getting there!

We’re working with the littles on letters, which they are greatly enjoying!

And the bigs are managing to work some fun into their school days ๐Ÿ™‚ Miranda Grace spent some time the other day building with Madeleine CaiQun’s math blocks.

She announced, “This is the story of Vader and how he comes face-to-face with God.” This girl never lacks for creativity ๐Ÿ™‚

And for her part, Madeleine CaiQun had some fun making herself into a bean-bag person upstairs.

I’m pleased that we’ve made the transition back to normal life as well as we have. Of course, I’ve been plagued by a cold for over 2 weeks now, and both Miranda and Atticus have been coughing some the last couple days, but I’d hoped everyone else was going to escape the worst of this illness. Miranda has been feeling pretty awful today, though, so I kept her home from swim practice and set her up on the couch for some extra rest and relaxation.

I’m hoping we can make it through the next couple weeks without any more illnesses and we can get a bit more school done before it’s time to disrupt all of our routines again for Christmas!

 

Surgery Update

I’d hoped to get a longer update posted last night, but it just didn’t happen – comforting FangFang when she was feeling yucky and then sleeping when she was comfortably sleeping took priority! I do so appreciate the prayers and support from all of you, though, so I want to let you know where we’re at today!

To back up a bit, we’d been planning for months to do bilateral tibia rodding surgery yesterday, but when FangFang broke her right humerus about 10 days ago, I’d sent a copy of the x-rays to her orthopedic surgeons in Omaha, just in case seeing those images changed their minds about surgery plans. Their assistant e-mailed me on Monday and said Dr. Esposito would talk with me on Tuesday about our options, but I didn’t think much of it. The fracture wasn’t incredibly severe, and operating on two limbs at a time is a fair amount already. However, when we saw him in pre-op yesterday, he suggested that we prioritize what was giving her the most trouble but try to rod all 3 bones if possible. He said he expected the humerus to continue to give her trouble (it had fractured previously in China and hadn’t healed to be as straight as would have been ideal, so we’d already been suspecting it could be problematic for her over time), and as long as it’s incapacitated anyway, we might as well fix it now and just have one surgery and one recovery period for all of it. These are the moments when I am most thankful we come to Omaha for care. Having an orthopedic surgeon who has worked with hundreds and hundreds of kids with osteogenesis imperfecta and can make these recommendations based on years of experience that give him more expertise than anyone else in his field is so helpful to me as a mom when I need to make the ultimate decision about what we should do. Though I was somewhat intimidated at the prospect of FangFang having 3 limbs fully incapacitated for a complete 4 week recovery period, I agreed that his proposal made the most sense, so that became the new plan for surgery, and they were, in fact, able to get to all 3 bones! They were even able to use the FD rods, which can expand with her bones as she grows, which is awesome!

It turns out that adding on the humerus does change the pain management aspect of post-op recovery pretty significantly, though. For rodding in the lower body, the preferred strategy for pain management is to place an epidural, but that epidural does nothing for pain in her arm. When she woke up, she was pretty upset. She got some heavy duty pain meds, all in quick succession, and some oxygen to help her after an intense crying spell, and that all helped.

She remained pretty out of it for most of the afternoon and evening, though. She felt nauseous and wanted to keep her bowl nearby…which was a bit awkward, since she cycled pretty rapidly through cycles of wakefulness and sleep, so she often fell asleep with her head in her bowl. We’d try to lean her back and remove the bowl, at which point she would awaken, outraged, and yell, “I need my bowl!” Whatever you say, my child…

As the afternoon wore on, she started to have some longer stretches of more peaceful bowl-less sleep, though.

And then she had more periods of wakefulness, during which she had very specific instructions for me about how I was to sit next to her on her bed with my arm underneath her head. That I can manage ๐Ÿ™‚

We were able to FaceTime with Matt and the kids, too. She remained pretty out of it until later in the evening, though. She had a pretty awake, alert period from about 7:30 – 10:00 last night, in which she seemed increasingly herself, beginning to show off what she was watching on her ipad to her nurse and chatting a bit more.

We actually got a pretty good, long stretch of sleep last night – by hospital standards, at least ๐Ÿ™‚ We all slept pretty well until around 4:00, when FangFang was asking if it was time to wake up and eat breakfast, but I assured her it was still night time, and we went back to sleep again.ย In my least favorite of standard-hospital-policy experiences, though, the lab person came at 5:30 a.m. and turned on the light and announced that we needed to get the nurse to come in un-tape the board under FangFang’s IV hand so she could do a blood draw. I’ve already asked what I need to do to request that the orders for tomorrow morning’s lab work be changed to be for once she wakes up instead of at 5:30. How institutions that are supposed to be committed to doing no harm came up with the brilliant idea of waking children who would greatly benefit from rest at 5:30 in the morning to stick them with a needle and draw blood is beyond me.

But now that we are up, FangFang is enjoying one of her favorite benefits of hospital time – virtually unlimited screen time ๐Ÿ™‚

She is definitely more herself this morning. She still tells me every 5 minutes or so, “Mommy, I feel sick,” but she is more interested in engaging, more friendly, and chattier with people she deems friendly (yes to her nurse, no to the lab tech who drew her blood).

The pain management team, which I love here, has already come by this morning, and they just turned off FangFang’s epidural. Assuming she does well without it, they’ll pull it, which is the first step in moving us toward going home, a prospect to which we are all looking forward. FangFang has asked about 12 times in the 2 hours she has been awake when she can go home to her brother and sisters. I’m anxious to get home, too. Today is Atticus’s actual birthday, and I’m so sad to be missing it ๐Ÿ™ Of course it phases him not at all – we celebrated his birthday last week, and when I told him last night that it was his last day of being 2 and then he’d be 3, he told me, “But I am 3 years old, Mom!” Okay, my boy ๐Ÿ™‚

Essentially, before we can go, we need to get FangFang transitioned to all oral pain meds, get her next Pamidronate infusion (which can happen after the epidural is pulled), and get her orthopedic surgeons to sign off on discharge. I’m hoping and praying for tomorrow (Thursday) morning. If you’d pray with us to that end, too, I’d appreciate it!

Another Trip to Omaha, Another Surgery

Later today, my mom and FangFang and I are heading to Omaha again in preparation for another surgery for FangFang. This time the plan is to do bilateral tibia rodding – inserting rods into both of her tibias (the main bone between the knee and the ankle). We’d talked with her surgeon last winter and spring, and he’d hoped that once her femurs were rodded, her tibias would do alright on their own, but since then she has fractured both tibias, with one of the fractures being quite significant. With that, the plan has changed. For her to continue to progress safely toward walking and other gross motor skill developments, which she very much wants to do, it will help her tremendously to have her tibias rodded. Those rods will straighten and strengthen her tibias, hopefully preventing them from fracturing so frequently, and when they do fracture, the rods will act as internal splints, lessening the severity and effect of the fractures.

I’m very much looking forward to having the surgery done. I’ll stop holding my breath and hoping not to hear that tell-tale crack every time she pulls herself up to stand on the couch and starts cruising along or scoots herself up into a low chair or tries to go up or down the stairs by herself.

I think it’s going to be safer for her, better for her ability to continue to develop her gross motor skills, and better for how her legs feel for her.

But I am sad that in order to gain all of those things, she has to endure yet another surgery. And we haven’t had great luck with fractures this last month or so. FangFang broke her right humerus just over a week ago.

And then the next day, she hurt her left arm. We weren’t sure whether it was a fracture or not, and she alternated between wanting to use it and wanting to have it splinted, and we have followed her lead on that. She seemed more confident that it was alright yesterday, so we’re hoping that’s a good sign and she’ll continue to be able to use it without issue.

Mostly I’m hoping that she won’t have all 4 limbs incapacitated at the same time. Two arms at once has been really hard, so I’m really hoping her left arm continues to feel alright!

Would you pray for our trip and for her surgery please? You could pray for these specific things –

  • Safe travels to Omaha and back.
  • My kiddos and Matt at home – Miranda, Madeleine CaiQun, and Atticus are staying home with Matt, who still has his regular teaching responsibilities this week, so the kids will be hanging out with various friends for many hours this week. Please pray for them (and for our friends), as this will be far from their normal routine, and pray for Matt, who will be working and parenting on his own for several days.
  • Successful bilateral tibia rodding – that the surgery would go well, that her surgeon would feel confident in the placement of the rods, and that she would have no complications. If you’re feeling particularly ambitious, you could pray that her surgeon is miraculously able to place FD rods, which are the type she has in her femurs, and which expand with the bone as it grows. He thinks her tibias are probably too small, and he’ll likely have to place a different type of rod, which he’d then have to replace sooner, but he still thinks that’s better than no rod. But we’ve heard from other parents that even when he expects not to be able to place FD rods, he’s sometimes able to do so, and that would be amazing.
  • Pain management – The Omaha Children’s Hospital pain management team is great, which is huge in terms of post-op care. Apart from making sure we avoid infection or actual surgical complications, pain management is really the biggest focus after surgery – and it’s a huge factor that plays into my next prayer request…
  • Discharge – We don’t know how long we’ll have to be inpatient after surgery. Assuming there are no complications, once we can get FangFang transitioned to oral pain meds, we should be able to leave and head home, and all of us do so much better here, so I’m hoping we won’t have to be in the hospital very long.
  • Emotional support in the hospital – FangFang is our ever-friendly, always joyful extrovert. But even she has a hard time after surgery. She’s hurting and sad and wants me to hold her and stay within her sight at all times. Please pray that my mom and I can care for her well not only physically but also emotionally.

And, while it feels a bit silly that I’m asking for prayers for myself as my daughter heads into surgery, would you please pray for me, too? I think it’s important to be real and honest about what my life looks like, and for those of you considering adopting a child with special needs, what life parenting a child with special needs looks like. Friends…I’m tired. We’re coming off of a week of hosting my family for Thanksgiving and caring for our 4 children, which is a lot normally, but add to that the fact that one child, for large portions of time, had zero arms available so needed an adult (mostly me) to do nearly everything for her, and I have a cold, and I have not been sleeping enough or sleeping well – it’s a lot. Physically, I’m tired. And beyond that I am emotionally weary.ย This will be our 4th trip to Omaha and our 3rd surgery in less than a year. I’ll be, again, leaving my other kiddos home while I travel, over Atticus’s birthday, no less, which is so hard on my mama heart. I’m tired from arguing with insurance companies; I’m tired from coordinating to get all the documentation we need for everything we pursue; I’m tired from reassuring jealous siblings who view a trip to the ER as a special “Mom date;” I’m tired from not having gotten to worship with my husband for nearly a year, as one of us is always in FangFang’s and Atticus’s classroom at church; I’m tired from coordinating logistics for all things; I’m tired from the ordinary demands of motherhood and friendship and life in general. I’m just tired. All around, I’m tired. I’m tired as I head into a week in which much will be demanded of me as a mom. Please hear me when I say,ย this is the life I want. Parents who knowingly adopt kids with special needs sometimes, when they express that things are hard, hear, “Well, isn’t this what you asked for?” Yes, yes it is. This is the life we’ve chosen; this is the life we want; and we wouldn’t trade it for anything. That doesn’t mean it’s always easy. I’m pressing on and persevering in the midst of all we have going on in our lives. I will continue to be the Chaos Coordinator and the Mama Bear that my kids need. But I would so appreciate your prayers for my energy, my stamina, and my heart as I do that.

I’ll keep you updated on how surgery goes and how we’re all doing as I’m able.

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 ๐Ÿ™‚

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 wasย 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 wasย 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.