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!

 

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.

Homeschooling 2017-2018

Our 2017-2018 school year is well underway! We’re about 8 weeks into our curriculum, which is, as usual, not quite as far as I’d like to be but is absolutely far enough ๐Ÿ™‚ This year we have Miranda (2nd grade), Madeleine CaiQun (1st grade), and our two littles, Atticus and FangFang, along for the ride.

I do actually have some goals for the littles this year! This will be the last year for which I do no formal schooling with them at all, but I want to start getting them prepared for that. To that end, we’re working on learning letters and numbers, and I’m more intentionally spending some time reading books to them (which is, honestly, most of what their “pre-school” year will look like anyway!).

Things are a bit more intense with the bigs ๐Ÿ™‚ We are using primarily Sonlight curriculum again, and everyone was super excited for our box day!

As usual, the girls dug in and started reading through a few of the books right away ๐Ÿ™‚

This year, we are using Core Cย for our History-Bible-Literature package – it is year 2 of World History (picking up after the Fall of Rome). Honestly, while I know there are people who are passionate about ancient history (I’m looking at you, David!), I’m enjoying getting to slightly more modern times.

We’re also usingย Science C, which has some biology but also focuses on geology, meteorology, and mechanical technology. So far we’ve been learning about animals and about how our human bodies work, which has been fun for all of us.

One thing that is new this year is that I have the girls each doing their own level of readers, with Madeleine CaiQun actually at the higher level. I knew even toward the beginning of last yearย that she was a notably strong reader, and while she struggles a bit with appropriate expression when reading out loud, she continues to be an excellent reader. She’s using the Grade 4 Readers this year. Miranda is also a great reader, and for this year she is working her way through the Grade 3 Readers.

This is the first year during which I’ve allowed the girls to do any of their reading silently on their own, just reporting back to me afterwards and talking with me about what they’ve read. I know this is the beginning of a transition for us, toward them being able to do more schooling independently. To be honest, it is a bit sad for me, in that I’m no longer intimately involved in everything they’re reading and doing, but it’s all part of the process of growing up and gaining independence, and I know it’s ultimately a good thing ๐Ÿ™‚ And one advantage is that I more often catch them digging into good books and curling up on the couch to read all on their own!

We generally start our days with seat work. Every family has to find their own routines, and over time, we’ve found that this is what works best for us! Miranda is continuing with Singapore math – at the beginning of the year, she finished up their 2nd grade curriculum, and she is now well into 3rd grade math. Math is pretty intuitive for her, and it brings me a lot of joy to work through it with her. It’s so neat to see her grasp new concepts – this week we tackled two-step word problems, and I wasn’t sure whether she’d understand the logical leap right away, but she absolutely got it!

Last year we tried a few different things for Madeleine CaiQun, for whom Singapore was not as good of a fit. She does best with a slow pace and with the incorporation of manipulatives and a gradual transition to completing the same math problems without those manipulatives. We ended up landing on Math-U-See as a math curriculum for her. Obviously it would be convenient (and cheaper!) to have every child in our family using the same curriculum, but one of the benefits of homeschooling is that weย can work with each student in the way they best learn, and this is an instance in which we see that playing out well in our family. We started with this curriculum mid-way through the year last year, so Madeleine CaiQun is wrapping up her Alpha year, and when she finishes that, we’ll start on Beta.

We are continuing to use Handwriting Without Tears for handwriting practice, with Madeleine CaiQun having another year of practice with printing (with her book modeled by Atticus!) and Miranda starting to learn how to write in cursive.

To round out our Language Arts curriculum, we’re using First Language Lessons: Level Twoย and All About Spelling (continuing in Level One).

We actually tackle our school work throughout the day, starting with seat work at the table (math and handwriting) and then taking a break. Miranda, in particular, does best if she gets to move around before spending a lot more time doing school. After our break, we move to the living room and snuggle on the couch for most of our “reading school,” after which our afternoons are usually pretty free (though we’re often finishing up something that didn’t quite happen that morning!). But our days conclude with the last of our school work, as Matt puts the littles to bed, and the big kids and I snuggle in my bed and use our read-alouds as bedtime stories.

Overall, the year is off to a good start ๐Ÿ™‚ I’m thankful, yet again, for awesome curriculum options, and I’m thankful for this time I get to spend with my kiddos!