for your amusement – some memories from a year ago

Today marks one year from the beginning of my trip to China to bring FangFang home. I feel all the feels as I remember that trip.

You can read about our first day of touring in Hong Kong here if you’d like, but there were also some cute, funny stories from that day that have been part of my reminiscing but that didn’t make it into that sight-seeing post. Adoption trips are intense, and while those first few days in country are always colored by the knowledge of that upcoming intensity, they are also fun. I treasured that time exploring a new city with just Madeleine CaiQun and my brother and sister-in-law.

As part of our Big Bus Tour, we were given cheap headphones, which could plug into a jack for each seat, and, upon making a language selection, you could listen to historical and contextual information about the island. Madeleine CaiQun was intrigued by this, and she asked me which language we should choose. When I responded, “English,” she said, “Oh, because we speak English?” I answered in the affirmative, and she responded with, “Oh. Well, what language do Uncle Danny and Sharon speak?!” She did not find it at all self-explanatory that they would also speak English ๐Ÿ˜‰

Our language discussion then continued later that evening during dinner.

The restaurant we visited provided for ordering dim sum style – there was a card listing out the options, and we’d put a dot next to the selections we wanted to order. We discussed what we wanted to order, and Daniel filled out the card, after which the waitress came to get it. As she was walking away, Madeleine CaiQun asked, in all earnestness, “Mom, do we understand English, but she understands dots?”

It may have been the sleep deprivation, but we all laughed hysterically for quite a while. I hope it’s at least slightly entertaining to you ๐Ÿ™‚ Happy Friday!

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!

 

I’m Interested in Adopting; Where Should I Start?

Over the years since we started pursuing adoption, we’ve gotten increasingly more questions about our journey, our family, and adoption in general. Frequently those questions are from people who are interested in considering pursuing adoption themselves, and they’d like to know where to start.

There are so many different avenues – adoption (or purely fostering) through the foster care system, domestic private adoption, and international adoption. And within each of those systems, there are countless other decisions to be made. If adopting internationally, from which country to pursue adopting? If domestic or internationally, which agency to use? Regardless of which path is chosen, to what age range and gender to be open? And to what special needs to be open? It can be overwhelming even to know where to start.

My initial suggestions may seem indirect, but for several reasons I think they truly are the best place to start. There are two places I’d recommend that anyone considering adoption start:

(1) First, research adoption parenting. All adoption is borne out of trauma and loss. For that reason, it is absolutely essential that children who join their families via adoption be parented in light of that reality. Of the whole wide range of parenting strategies that may work well for neurotypical children, only a subset consistently works well for children who have joined their families through adoption. The first book I’d recommend reading would be The Connected Child by Karyn Purvis and David Cross. It isย the go-to book for understanding how to parent children who have lived through trauma. To be blunt, if you are unwilling move toward parenting in the way the book describes, adoption is not for you, because that is what adopted children need from their adoptive parents. If you are willing to continue to learn more about connected parenting and do your best to parent in whatever way is best for your adopted children, regardless of how different that might be from what your upbringing was or what your instincts might be, then you’ll be in a good place to start pursuing adoption.

(2) Research adoption ethics. Not all adoption programs are created equal. There is fraud. There is trafficking. A “demand” (for instance, for young girls with no special needs, who are, ideally, white) can lead to motivation to “create” a supply. I often recommend that people start out with a series of Jen Hatmaker’s blog posts to begin to learn about ethics in adoption:ย  Adoption Ethics Part One, Part Two, and Part Three. It’s best to research ethics at the beginning. Learn what the red flags are, learn what the potential issues are with any programs you may be considering, learn more about what questions to ask. It’s so important to do thisย before you have an idea in your head of what your future family is going to look like and most definitelyย before you have an adorable photo of an absolutely precious child, whom you want to scoop up into your arms and bring home forever. We as adoptive parents are responsible for encouraging ethical behavior by all the actors in the adoption world, and to do that, we have to understand what is happening in the adoption world.

Only after you have done some research into parenting children who join their families through adoption and into adoption ethics would I recommend that you start researching adoption programs.

Some of the best general resources can be found at Rainbow Kids and Creating a Family. In particular, this chart at Creating a Family may be helpful in comparing different types of adoption. Once you start making some choices about the specific roads you want to walk in your adoption journey, there are many more resources out there, but for broadly applicable, initial information, those are two good websites with which to start! Please also feel free to reach out to me, and I’m happy to talk more any time ๐Ÿ™‚

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.