Preparing to Parent a Child with OI: What Does that Look Like?

When I first heard of osteogenesis imperfecta (OI), I assumed that it just meant that the bones of the person affected by it would fracture more easily than those of other people, but as I shared here, there’s actually a bit more to it than that.

There’s also more to parenting a child with OI than I realized at first, and I’ve spent the last 9 months doing all that I can to learn about that. I began by talking to moms of kids with OI and adults with OI as we were reviewing our daughter’s file. Of course, I also talked with our pediatrician, who consulted with a local orthopedic surgeon, and I made contact with the orthopedic surgeon and endocrinologist who run the OI clinic in Omaha, offering some of the best care in the world for people with OI. All of that was incredibly helpful, and  I don’t want to discount the expertise of medical professionals, but OI is such a rare condition that very few doctors and nurses have experience with it, and I’ve so appreciated the opportunity to learn from the experiences of parents who are living right now the reality of life parenting children with OI.

One of the moms with whom I connected added me to a Facebook group of parents who had adopted children with OI so that I could ask questions there, and those mamas answered so many of my questions. And once we accepted Fang Fang’s referral and committed to moving forward with adopting her, I joined the Facebook group for all parents of children with OI, and that group is an awesome resource, as well. And these parents? They are amazing. Not only do so many of them take such excellent care of their own children, but they also have gone out of their way to pass on their wisdom to me (and to other expectant parents).

One thing I’ve learned from those parents is the importance of having a “break box” on hand at all times, whether we’re at home or out and about. Fractures can happen at any time, and we’ll want to be prepared. It’s true that we could go to the emergency room any time a fracture happens, but an ER visit is not always necessary, and even if it is required, we can do a lot to make our daughter more comfortable before transporting her. We should have medication available to address spasms and pain as a first line of defense. Then we should have splinting supplies, so that we’re able to immobilize limbs and splint any fracture at any time.

Another mama actually sent me a whole stash of supplies for the beginning of a break box, each labelled with instructions for use!

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You cannot believe how excited I was to get that box! I also started to add to it gradually as I learned more myself. There isn’t anything like a book you can read about how to parent a child with OI or even about OI itself, but I’ve gleaned so much wisdom from reading other parents’ posts in the Facebook group for parents of kids with OI, seeing what challenges other families face and what advice they receive.

This month another mom who sometimes travels through our area for work stopped by our house and gave me a whole morning of her time to talk about parenting her daughter who has OI and give me a hands-on splinting tutorial! What an amazing blessing! Fortunately, both Miranda and Madeleine CaiQun were willing to help us practice 🙂

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I’ve also learned about the need for a wheelchair – and specifically a wheelchair that is customized for her little body. Fang Fang is tiny, but she is 3, which means she’s at an age at which children are generally able to be mobile themselves. At home, she’ll be able to crawl or scoot, but that’s less socially acceptable at places like Target, and we’ll need to be able to facilitate her independent mobility. Additionally, we need to anticipate fractures. We don’t know when or how they’ll occur, but we do know they’ll occur, likely to major leg bones at some point, so we need to be prepared, and that means having a wheelchair available. We’ll also likely need a gait trainer and/or walker for her at some point, but we’ll wait for her physical therapist to weigh in on that.

I’ve been challenged to be an advocate for Fang Fang, even in medical contexts. I got a bit of a taste of that after Matt’s heart attack in February, but this will be more of a sustained need. Because OI is such a rare condition, I need to be an expert, and I need to be willing to discuss medical procedures and treatments with doctors. I need to ask that her blood pressure not be taken unless absolutely necessary, because the tightness of blood pressure cuffs can cause fractures. In case of fractures, I need to insist that I position her for x-rays, because well-meaning medical professionals who are not experienced in working with individuals affected by OI sometimes don’t know how to move limbs without causing further injury.

I’ve asked many questions of our pediatrician and of other OI moms, but I’ve also been seeking out other resources. I talked with the HR department at Mizzou to help me figure out which insurance plan would offer us the best financial coverage for all the needs we expect to have in the next year. There are two amazing mamas to kids with special needs who are part of our church, and both of them have been so gracious in answering my many questions. I’ve also talked with our local school system. And I’ve made contact with a local organization supporting individuals with disabilities. I have the information I need in order to get her set up with all the local support for which she’ll qualify as soon as she gets home.

By nature, I’m really a very dorky person, so I have actually enjoyed doing all this research and learning as much as possible about OI and how to care for Chen Fang once she’s home. Even if that weren’t the case, though, I believe I owe it to her to prepare as well as possible for her arrival, and I’m doing all I can to make that a reality!

FAQ: Adoption Travel – Who? When?

Some of the most frequently asked questions we’ve received as we’ve worked our way through this adoption process relate to travel.

First, who will travel? At least one adoptive parent is required to travel. Last time Matt, Miranda, my mom, and I all traveled to adopt Madeleine CaiQun, and it was an amazing trip, and that was absolutely the best decision for our family at that time.

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This time around, the logistics surrounding traveling as a family would be somewhat more complex given our greater numbers, and it would be tremendously more expensive, and we’re not sure that even if we had that extra money on hand, it would be wise for all of us to travel. Given the young ages of our children, we think it best for one of us to stay home with them and the other to travel. It’s reasonably likely that we’d travel during times Matt is supposed to teach, and on top of that, I’ll be our daughter’s primary caregiver, so it makes most sense for us to encourage her to bond with me first. That means that I’ll travel, and Matt will stay home. And I’m going to take Madeleine CaiQun with me. The cost of bringing one additional child is not all that high, and we saw, on our last trip, how beneficial it was for Mei Mei’s adjustment to our family to have a sibling there with us, and we’re hopeful that having her there will aid in our baby#4’s transition to our family. And of course there is the added benefit that she’ll have the opportunity to return to and visit the country of her birth. Additionally, any two of our children at home always get along better than all three, so my having her with me will hopefully make life at home easier for Matt and my mom, who has graciously agreed to stay home from China and instead help Matt maintain life on the home front.

I would obviously love to have Matt with me on this adventure, but having already traveled to China for an adoption trip once before, doing so without him this time feels manageable. However, I don’t think it would be wise for me to go without at least one other adult. I asked my brother and sister-in-law if either or both of them would be willing to accompany me, and they’ve both graciously agreed to do so, and I’m very grateful for that. They’ll be supportive and helpful and, of course, are much beloved by Madeleine CaiQun 🙂

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We’ll be a party of 4 traveling to China and party of 5 returning home! I am absolutely dreading leaving Miranda and Atticus for that long – I’ve never been away from them for anything like that length of time, and I’m sure I’ll miss them like crazy. As we’ve talked and prayed about it, though, we’ve become more and more convinced that this is the best travel scenario possible.

While the group of people traveling is pretty well set, our timing is less certain. I’m a part of a number of Facebook groups centered around providing support for families adopting from China, and in one of them there is a pretty reliable chart tracking current timelines for each step throughout the process. If the averages hold, we are likely to get our Letter of Acceptance (LOA), also known as Letter Seeking Confirmation (LSC), sometime this week. Our dossier was out of translation (OOT) last Tuesday, September 13, and we were out of review as of yesterday, Monday, September 19. We have probably lost a little bit of time because the CCCWA (the central governing body in China overseeing everything related to adoptions) was closed September 15 – September 17 for the Mid-Autumn Moon Festival, but they were back to work on Sunday, and usually the next steps (matching and issuing the LSC) are fairly quick, so hopefully we’ll make our way through that this week and get word that our LSC is on its way! This LOA/LSC step usually has the most variation and is thus the most crucial to our timing.

From there, the process gets a little confusing, but essentially we wait for several levels of US Immigration Approval. First we file our I800 (Petition to Classify Convention Adoptee as Immediate Relative) with USCIS. Once that application is approved, our paperwork is forwarded to the National Visa Center (NVC), where we will be assigned some new case numbers (our GUZ and invoice numbers) and receive information we’ll need to fill out the DS-260 form to apply for our child’s US immigrant visa. The NVC will also cable our file information to the US Consulate in Guangzhou. As soon as we are able to obtain a copy of the letter verifying that they have done so, our agency will drop off our Article V paperwork with the consulate in Guangzhou. The consulate reviews all of our paperwork and determines that everything is in order, and they issue our Article V to our agency, which is the last US immigration approval we need before traveling. While confusing in their layers, all of these steps are reasonably predictable in their timing, taking approximately 5-6 weeks in total.

At that point, everything is submitted back to the CCCWA, which has to issue us a Travel Approval (TA) – essentially an invitation to come pick up our child. TAs are coming pretty quickly these days – almost all that have been issued most recently have come in less than a week. There is no guarantee that that timing will hold, but we certainly hope it does. Once we have our TA, we request an appointment with the US Consulate in Guangzhou, and as soon as that is confirmed, we can get to work booking our travel! Usually you can leave about 2 weeks after TA is received.

All that to say, from LOA/LSC (which we hope to have this week) to travel can be approximately 9 weeks IF and only if everything goes perfectly. I’m giving us a 1 week grace period and hoping and praying like crazy to leave around December 8 or 9. Please, please, please pray with me that we’re able to do that! If we are able to travel then, we’d be gone for Matt’s finals week and the first week of winter break, which would be a pretty low key time for him at school and should make life here for him and my mom pretty smooth. Then we’d return around December 22 or 23 – just in time to have our family of 6 home for Christmas! It would be crazy – half of our family would be so incredibly jet-lagged for Christmas itself – but we’d be together, and that would be so amazing.

It’s entirely doable for us to travel then, but it’s by no means guaranteed. We really need to get our LOA/LSC this month, preferably this week, in order for it to be possible, and every other step needs to continue to go pretty quickly. If that doesn’t happen, we’ll need to make the decision about whether we travel at the end of December, which would mean getting our girl home faster and having more of Matt’s winter break left to enjoy all together but would also mean spending Christmas with half of us stateside and half in China; or travel in January, which means not traveling over Christmas but then bringing our little one home later and not having as much time over Matt’s Christmas break to settle into life together. I really don’t want to have to make that decision. I really, really want to travel and be home by Christmas. Would you pray with me that that can happen?

Our New Diet

In the 2 months since we’ve returned home from New York, some of the most frequent questions we’ve gotten have been about the dietary changes we’ve made. This area was really overwhelming for me at first – I wasn’t sure what changes we needed to make or how to find meals that met whatever standards we were going to follow. My first resource was the American Heart Association’s diet and lifestyle recommendations, which advocate for a low-sodium, low-cholesterol diet, featuring primarily chicken and fish, whole grains, and fruits and vegetables. That sounded doable, and in fact many of the recipes we were already using met those criteria.

As we did more research, though, we began to wonder if those recommendations were really the best we could do, particularly with regards to heart health. There seems to be general agreement that consumption of red meat is harmful, but what we began to read was that even consuming a diet high in animal protein in general seemed problematic. The Lyon Heart Study demonstrated that patients following a Mediterranean-style diet (primarily plant-based foods, whole grains, limiting salt and red meat) had significantly better outcomes than patients following the standard diet prescribed for patients with cardiac issues. We watched Forks Over Knives and heard about the China Study and saw and read stories of people who had serious heart disease who had been able to reverse it by adopting a whole-foods, plant-based diet. We read about the better health outcomes, particularly regarding heart disease, that vegetarians have relative to omnivores. The arguments were compelling.

Curried Tempeh Grilled Cheese with Mango Chutney and Tomato Bisque
Curried Tempeh Grilled Cheese with Mango Chutney and Tomato Bisque

We discussed what we were finding with Matt’s doctor, who talked with us about how the American Heart Association’s recommendations are based upon collections of large-scale studies, which necessarily means that they are never going to reflect the absolute latest research. He and other doctors believe that the direction they will head in the next 10 or 15 years, though, is further away from animal-based foods and toward more plant-based foods.

And so, based on the evidence we’ve been seeing as we’ve researched healthy eating, particularly with regards to cardiovascular health, we’ve made some pretty drastic changes. We try to eat fish once or twice a week but otherwise avoid meat when reasonably possible (we’ve had about two servings of non-fish meat in the last 2 months), and we are reducing our dairy consumption (so far by about half). We’re also focusing on consuming whole grains, like brown rice, quinoa, whole wheat pasta, oats, and bread made with whole wheat flour. We’re making sure that vegetables – instead of being a last-minute add-on to a meat-based meal – are rather a centerpiece of what we’re eating each day.

Smoky Chili with Sweet Potatoes
Smoky Chili with Sweet Potatoes

At first it was really difficult to find meals and recipes that met these criteria. So much of what we consume in American culture is based around meat and simple, processed carbs. However, over the last couple months I’ve gotten better at finding, assessing, and sometimes slightly modifying recipes for our health and enjoyment. So that you all don’t have to suffer through some of the inedible meals we’ve tried, I’m including information here about some of the recipes we have enjoyed in recent weeks. In no particular order, these are the vegetarian meals we’ve been enjoying:

Homemade Pasta Sauce
Homemade Pasta Sauce (before its encounter with the immersion blender)

My very favorite new cookbook is Moosewood Restaurant Favorites – do yourself a favor and order it. Seriously, it’s glorious. I believe people should be compensated for their work, so I’m not going to post their recipes here, but I’d encourage you to get it. Many of the recipes we’ve most enjoyed are contained within this book, in particular the following:

  • Thai Butternut Squash Soup (p 58)
  • Thai Noodle Salad (p 100)
  • Southwestern Sweet Potato Corn Soup  (p 56)
  • Creamy Herbed Potato Soup (p 49)
  • Pasta with Asparagus and Lemon Sauce (p 224)
  • Peruvian Quinoa and Vegetable Salad (p 99)
  • Summer Vegetable Curry (p 123)

And here are some of the recipes we’ve most enjoyed for eating fish:

The same cookbook I mentioned above has also been a blessing with regards to recipes for preparing fish. So far we’ve tried and liked:

  • Spicy Caribbean Fish (p 240)
  • Creamy Fish Stew (p 247)
  • Teriyaki Fish (p 241)
Creamy Fish Stew
Creamy Fish Stew

I’d encourage you, if you’re concerned about your health and, in particular, want to enjoy a heart-healthy diet, to do your research about animal-based foods and plant-based foods. So much of what we eat and the diets we advocate in American culture are really harmful to our bodies. Not everyone is facing the same medical circumstances we’re facing, and not everyone has to make the same choices we’ve made, but I think many of us can do better than we’re doing to care for our bodies. So far Matt has lost about 20 pounds and is feeling immeasurably better than he did before, and I’m feeling good, as well.

If you’re interested in pursuing more of a plant-based pescetarian or vegetarian diet, I hope some of these recipes can be a blessing to you in your journey!

adoption love

Someone in a China adoption Facebook group to which I belong posted a link to an article this past weekend that started quite a discussion. The article itself – entitled, “A Different Kind of Love: Does a mother love a child she has adopted in the same way she might love a birth child? And why is it such a taboo to ask?” – is old, but I still believe a response is appropriate. Most importantly, I want my own adopted daughter to be absolutely certain of my thoughts and feelings on the matter. And beyond that, adoptive families do receive questions (or sometimes statements) along the lines of the topics the article addresses, people wondering if they could ever love an adopted child as much as they would love a child biologically related to them, and I’d like to address that issue.

For those of you who want the short answer, I’m going to state it unequivocally here: I love all of my children immeasurably and uniquely but equally – none of my children are loved more than any other. Each one is beyond precious to me, loved with the entirety of my heart and being.

It’s true that there are differences in parenting biological children and adopted children, but the same could be said of boys and girls or babies born in summer and babies born in winter. The same is true of children with different personalities. As a parent, my job is not to have a mechanical set of procedures in place to be followed in exactly the same manner for each child. My job is to be thoughtful and discerning, studying each of my children, looking for their strengths and weaknesses, walking with each one through life and loving and guiding them in whatever ways they need.

For me, my love for my children began even as I learned just tidbits of information about who they were. Those 20-week ultrasounds and the referral pictures and documents were oh-so-precious in those months during which we waited to meet our children.

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Miranda at her 20-week ultrasound; our first update photos on Madeleine CaiQun, received just after we submitted our Letter of Intent to adopt her; and Atticus at his 20-week ultrasound

We didn’t have much information, but we knew a little, and we treasured that which we knew and made plans to bond with each of our kiddos upon their arrival. And when they did arrive…whether at birth or at age 2…we were smitten with them. They were ours, and for that reason and that reason alone, we loved them wholeheartedly.

We also realized that we had zero control over who they were! Each was a person in their own right with distinct likes and dislikes and needs and wants, only a few of which we could have guessed prior to their arrival. We needed to pursue each child’s heart and be thoughtful and intentional as we sought to create a bond with each one. We spent hours taking walks on beautiful days with that late-spring baby held close in the Moby wrap.

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Our most recent baby, who needed to know I was nearby at night in order to sleep well, was kept close at night. And we employed a litany of strategies designed specifically to foster attachment with the child whom we adopted after she’d spent 2 years living in an orphanage.

Honestly, our attachment dance with Madeleine CaiQun has been and continues to be a joy – it has gone much more smoothly than we knew it might, and we know that others have much harder roads to walk. I don’t mean to belittle the very real struggles other families face in forming healthy relationships, whether with biological children or adopted children. However, attachment is not the same as love. And even beyond that, the love we have for our children cannot be dependent upon them – that’s not what love looks like. Self-interest might look like that…but love doesn’t.

Love looks like a Savior who knew that we would blow it, that we would turn away from the God of the universe and that we would fail at loving the people around us, so He came to earth and did it all for us, in fact gave His very life for us. And then one of His closest friends tells us, “We love because He first loved us.” We are enabled to love by virtue of His love.

All of our children, biological and adopted, have moments in which they are disrespectful, unkind, and just plain hard to love. And yet, I am their mother. I don’t love them because they obey, I don’t love them because they make me look good, I don’t love them because they’re fun, and I certainly don’t love them because they came from my body.

I love them because they’re my children – biological or adopted, they’re my children, and I love them to no end. And, God help me, if called to do so, I would give my life for each and every one of these precious souls, however they came to be part of our family.

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Freezer Meals

I’ve mentioned here and on Facebook that one of my projects to prepare for baby Atticus’s arrival has been to stock my freezer with meals, and I’ve gotten some requests for ideas and recipes for freezer meals, so I’m going to share here what I’ve done thus far 🙂

I’ve seen a number of websites and blogs talking about preparing a month’s worth of meals in 4 hours or something of that sort, and they just never seem doable to me. Maybe I’m slow working in the kitchen (and, pregnant, I definitely require far more bathroom breaks than the average person takes during that time period!), but I’m certain it would take me far longer than 4 hours to do all of that prep work. What I’ve found easier for my schedule is occasionally to set aside some time solely for preparing meals to freeze but much more often to plan to have a certain meal for dinner and multiply the recipe such that we can eat one as our family’s dinner that evening and freeze the others.

As I’ve worked on preparing these meals, our grocery budget for the past couple months has definitely taken a hit, but we’ll make that up with lower grocery bills (and, even more significant, fewer evenings of ordering take-out!) when we’re actually eating these meals after Atticus is born, so I think overall it will be a net gain. At this point, I have about 30 meals in our freezer, which I think should help out significantly with our adjustment to being a family of 5! I may still try to get a few more done, but I feel pretty good about having this amount prepared.

Here are the meals I’ve frozen thus far, along with links to recipes (except for those from published cookbooks):

Recipes from external websites:

  • Chicken Enchiladas – Note: I used slightly less onion (Matt’s preference) but threw in a red pepper instead. Also, I found that 1 can of enchilada sauce per pan was sufficient for us.
  • Tortellini Soup – Note: I’ve frozen this fully cooked, but then you really need to thaw entirely and be careful not to heat for too long to ensure that your tortellini doesn’t get too mushy. I think it might work better to prepare as directed except for the tortellini and just make that and throw it in when you’re thawing the soup to eat.
  • Sweet and Sour Chicken – Note: We like our sweet and sour chicken with plenty of sauce, so unless you’re using very small chicken breasts, I’d recommend fewer chicken breasts relative to the sauce ingredients in this recipe. I also added some pineapple chunks.
  • Chicken Tacos – Note: Instead of the pico de gallo, we use 1 jar of salsa (24 oz) and 1 can of chopped green chilies (5 oz).

Recipes from friends and family (or created on my own):

Recipes from Fix, Freeze, Feast:

  • Pecan-Crusted Chicken Strips (page 38)
  • Rama Chicken (page 48)
  • Cashew Chicken (page 52)

Recipes from Fix-It and Forget-It Cookbook:

  • Cranberry Pork Roast (page 134) – Note: I’m not sure whether this would work well as a meal prepared completely in advance. However, it really takes only a few minutes to throw together the sauce that goes into the crock pot with the pork roast, so what I did was buy a large pork roast, trim the fat and cut it into portions of about 2.5 lbs. each, and freeze the pork roast portions separately. Then I’ve set aside in the pantry the ingredients that we don’t necessarily normally have on hand with a note that they are to be used to make this meal.
  • Lemon Garlic Chicken (page 181)

Some of the meals listed above (chicken tacos, for instance) are not frozen as entire meals so require some planning ahead, but it’s still helpful to have the bulk of the work done ahead of time. I’ve actually found that the same holds true for other ingredients. For instance, I have several chicken breasts already cut up into bite-size pieces and frozen individually that way. I’m also going to chop up some pineapples and bell peppers this weekend to freeze. Later on, I can throw all of those ingredients into a stir fry with very little effort.

All in all, I’m hoping this will be a significant time, money, and sanity saver for us after baby Atticus arrives, and I hope it is helpful for some of you readers, as well!