a post about pictures of Zoe's brain today (and pictures of her sweet face from a few days ago!)

As this posts to the blog, we'll be on our way to the hospital with Zoe to get some lovely pictures of her brain.

She can't eat anything until afterward. (You know, the whole keeping her from aspirating under sedation thing.)

And, as much as she hated feeding times in the first two weeks we had her, girlfriend loves her food now.

Please pray that she'll handle it well. And pray that the pictures help us know how to proceed in caring for her.

And if you'd like a bit o' encouragement (or to glimpse some vintage Dingle family pictures*), here's a post about parenting and trusting God that I wrote back in 2009 when Robbie had to be sedated for an MRI: not understanding the circumstances

*Okay, okay, the pictures aren't old enough to be vintage, but when I can see such huge differences in the big kids between then and now, it feels like they're that old!

If you're curious about the procedure for little ones, here's the post I did about that back then: Robbie's MRI

Finally, some pictures that are definitely not vintage, taken in our yard the other day during an impromptu shoot while the big kids went to the store with Daddy!












links I love in disability ministry {8/8/2012}

First, let me say Happy Father's Day... in Taiwan, that is. The Mandarin word for father (which, in our alphabet, is "baba") and today's date (the word eight is like "ba," so today is "ba ba") sound similar, so it's Father's Day in Zoe's birth country.

And now, on to some links that have edified and encouraged us as my husband and I co-lead our church's special needs ministry...

Kempton Turner: When Lightning Strikes Twice Pastor Kempton's answer to the question about whether or not God allowed his son's disability is a must read.

4 Disturbing Trends in the Contemporary Church We fail in ministry (and life) when we rely on our own words, our own methods (including, I would add, an over-reliance on what secular practices are in disability-related fields in place of a primary emphasis on Christ), our own good works, and our own glory.

Can a Christian Starve to Death? Challies' answer to this question (better worded, "if God promises to supply every need, why do Christians ever starve to death or suffer in other ways?") is helpful to all of us as we consider God's sovereignty in light of the suffering that is part of many disabilities.

They Simply Don't Know My friend Adeye brings to light the glaring absence of special needs from many adoption and orphan care conferences. (I've noticed that when special needs sessions are present, the focus is limited to HIV+ or Down syndrome.)

Ellie May Challis and Oscar Pistorious "Race" in an Inspiring Series of Newly-Discovered Images Yep, I definitely have a favorite Olympian.

"Individuals can practice eugenics..." And so we, who value all life, must show a different option as we glorify the Author of all life.

Son with autism hears a softer world thanks to new headphones If a child or adult showed up to your church wearing headphones as an accommodation for a sensory sensitivity to noise, would the leaders and members of all ages welcome them or be caught off guard by something that's outside of the norm you're used to? (If we're honest, sometimes we respond with the latter, even if we know the former response is the right one.)

This isn't a disability ministry video, but it's one from a major missions-focused event we had last month at our church. Enjoy.

things that have been said to us that make my heart ache a little...

Please don't read this and then fear that you have to be careful about what you say to me, lest I mock it in a future post. First, I'm not mocking any of these statements. And second, I am thankful for comments that surprise me - even the ones that bother me - because they make me think. 

Let's talk. I won't turn your words into a post. I promise.

"Well, of course she's stubborn. All Chinese kids are."
Wow, where do I start? She isn't Chinese. She's actually about 50% Puyama (a tribe indigenous to Taiwan), about 25% Dawu (another tribe indigenous to Taiwan), and about 25% Han Chinese.

Okay, so she is Chinese. A quarter Chinese.

But, even if she were 100% Chinese, here's a quick lesson. Any statement beginning "All _________ kids are" is always wrong.

Well, almost always. The statement, "All Dingle kids are cute," is absolutely true.

"I bet you're glad you got her so young so you don't have to deal with all the problems with orphans who are older."
Um, yes, we're glad we got her young. There are definite benefits to that.

But we planned to adopt an older child. And we still hope to do so someday.

Because I know people know this already, but it's worth saying: those older children who (might, but might not) have problems? They're orphans.

As in, they don't have a mom or dad or other family member caring for them.

That's a problem.

And, quite frankly, that's a problem that many of us could solve. Not for every child, but for one, either through adoption or through supporting someone else's adoption.

"It's so cool that the ministry where Zoe lived works with many mothers to help them parent their children so that they can have an option other than adoption."
Yes. That is very, very cool.

The reason this one makes my heart ache is that not enough ministries like Morning Light exist. At Morning Light, their focus isn't adoptions. Sure, they facilitate them, and they do it well.

However, their purpose is to function as a crisis pregnancy center. That involves not just counseling mothers to choose other options than abortion, but it also means they support moms after they choose life. If that means providing housing, they do that; the mothers' home is a three story building with dorm rooms. If that means they need something to eat, they have a food bank that includes, yes, food but also diapers and formula and other necessities. If that means they choose adoption but need counseling and support as they move forward, they have it. And if it means that they don't want to meet their child's adoptive parents or see their child again after she is born, well, they honor that too.

Oh, how I wish we could have met Zoe's first mother for so many reasons.

As I started to write this, I didn't mean to end it in this way, but I really, truly, wholeheartedly love the missionaries who served Zoe and her friends so well... so if you are willing to sacrifice something to benefit this precious couple who is sacrificing themselves daily to serve the people of Taitung (and I forgot to add above, sharing Christ with those they serve, in addition to meeting their earthly needs), here's where you can make a tax-deductible donation to the crucial work they do:

CENTRAL MISSIONARY CLEARINGHOUSE 
P.O. Box 219228 
Houston, Texas 77218-9228 
Include a note that the donation is for: Luke & Deana Pan/Morning Light

In addition to one-time donations, they are in need of donors to sponsor mothers in the mother's home with monthly donations. We'll be doing that starting next month.

Let me end this post by saying, once again, please don't be afraid to say something to us, lest we be bothered by it. We want to be an open book about what God has done in our lives through adoption, so feel free to ask away!

And here's another post for you adoption-loving folk. Shaun Groves will be mc'ing for the Together for Adoption conference in Atlanta in September, and I've heard great things about it!

our neurology appointment last Thursday {alternate title: upcoming tests & exceeded expectations}

Thinking about last Thursday exhausts me.

First, I left the house a little before 9 to bring my two big kids to a friend's house so they could play while Zoe and I headed to the cardiologist. That drive took longer than planned because I was so concerned about having all the Taiwanese medical records and other needed items - oh, and the kids! - with me that I turned the wrong way out of the neighborhood.

And didn't even notice until I had driven five minutes in the wrong direction.

Oops.

That wasn't exactly how I expected to start the day.

After dropping off the kids, I drove to Duke Raleigh Hospital to see the Duke cardiologist. And I Facebooked, "I enjoy the irony that Zoe, daughter of a UNC grad and a NC State grad, is being seen by a Duke cardiologist." (As my roommate from Carolina commented, "My soul hurts.")

After that wonderful appointment, I returned to my friend's house for sweet conversation and encouragement. Karen never disappoints in that regard - so thankful for her!

Then we swung by Cookout - 'tis the season of watermelon milkshakes after all - for lunch and by the old 'hood to pick up one of our old neighbors so that she could hang out here with the big kiddos in the afternoon.

Zoe and I dropped Natalie (newly a teenager - happy birthday, Nat!), Jocelyn, and Robbie off at the house, and then we headed just a few minutes down the road to Raleigh Neurology.

And then we got home at about 3 or 3:30pm. What a long day!

But this post is supposed to about her neurology appointment, so...

The neurologist - who reviewed Zoe's MRI when another family was considering adopting her before we even knew she existed - was surprised to see how well she was doing. He mentioned that they occasionally see a child who, like Zoe, "has widespread, potentially devastating damage but isn't affected much by it." As he noted, we only use a small part of our brains - about 10% once we're adults - so it all depends on whether the damage is in those active parts of the brain or not. 

The good signs right now:
  • her alertness and attentiveness and curiosity
  • her love for people-watching, because it shows that she's interested in and learning from her surroundings
  • her stubbornness about taking a bottle from Lee while refusing to take one from me, because it shows a cognitive choice and preference
  • her fight against eating, even after the thrush was gone and feeding no longer hurt, because it shows her memory (i.e. "it hurt last time, so I don't want to eat this time, even though it doesn't hurt now")
  • her new desire to reach for things and grab anything and everything within an arm's length 
  • her great head control
  • the strength in her legs
  • her growth and improvement in the past few weeks
The couple of not as good signs right now:
  • her thighs are tight and spastic, due to cerebral palsy
  • her core strength is lacking, and she's not able to sit on her own
Her current diagnoses:
Her upcoming tests:
  • Thursday morning (August 9): sedated MRI of her brain at Wake Med 
  • August 20: EEG to check on seizure activity (none observed by us or her caretakers in Taiwan, but epilepsy is common with PVL, so it's worth checking out)
  • August 28: follow-up appointment with the neurologist to discuss the findings, though we should get a call from his nurse a couple days after each test to give us a general reading of them
Oh, and we have a well baby check-up a week from today at the pediatrician.

Yep, it's a lot. But it's worth it, for the privilege of parenting this sweet girl...

This picture is deceptive. I propped her up and then hurried to take a picture - she isn't able to sit like this on her own or for any sustained period of time!

our cardiology appointment last Thursday {alternate title: "your daughter has a healthy heart!"}


Until the night before her appointment, I thought that Zoe's notation of an ASD - atrial septal defect, or a hole between the two chambers of the heart - was a mistake. As I flipped through her records that night, though, I realized the ASD had been properly diagnosed with tests in Taiwan. It was no typo. I wasn't anxious, but I realize that our sweet girl was indeed born with a heart defect and that the appointment was indeed necessary.


After a night of prayer, I arrived, carrying a baby, a diaper bag, and a folder of medical records written in a mixture of English and Chinese.

Little did I know the sweetness God had in store.

First, I checked in. As a glanced down, I saw a plaque on the man's desk,

Hear me when I call, O God of my righteousness!
You have relieved me in my distress;
Have mercy on me, and hear my prayer.
Psalm 4:1

How those words soothed my heart!

Then, the nurse called us back. Zoe watched her closely, a little more closely than usual. I realized that Zoe had honed in on the familiarity of this precious nurse, a woman from the Philippines who looked more like Zoe than most other people she has seen since arriving here.

As we chatted over Zoe's vitals, the conversation turned to adoption, as it often does when you have fair skin and blue eyes but are holding a baby with olive skin and eyes so dark that you have to look hard to spot the pupils. The nurse asked about the cost of adoption, and I - a chronic oversharer - replied that the total was around $27,000. (I like measurable terms. "Expensive" isn't measurable.)

She told me that she and her husband didn't have any children but that she wanted to adopt a school-aged child from Taiwan or another country near her homeland. Her husband had agreed just that week to move forward with adoption plans, but only if they could afford it. Her exact words to me? "You are an angel sent here today, because you just told me that we can afford it."

Next, she introduced me and Zoe to the rest of the nurses, who oohed and aahed over her. (Let me tell you: I swell with the same pride when people compliment Zoe as I did - and still do - when people compliment Jocelyn or Robbie. Doesn't matter if they came to us through pregnancy or adoption; it's that same momma pride.)

Then, she led us to an exam room with circulatory system diagrams that made me think of Jocelyn and how much she would have loved to check them out.

And then, Dr. M came in. I requested him because he is the heart doc for at least two families we know well, including one little guy we serve in special needs ministry each week. I didn't know when I requested him that he specializes in cardiology consults for adoptive families, reviewing medical records and answering questions when a family is considering a referral or moving forward with an adoption of a child with a heart defect. As we talked about the uncertainty of medical records with adoptions, he shared that two of his children were adopted from Korea. It was refreshing to talk with a specialist who knows more about adoption - both as a doctor and as a parent - than I do.

After a chat with Dr. M, Zoe and I were sent across the hall for an ultrasound of her heart to figure out if her ASD had healed and if anything else might be going on. I took a deep breath as we walked, because I hate medical procedures for my babies. I saw an adult hospital bed and cringed at the thought of lying my daughter on such a big bed. That is, until the sonographer told me to climb up on the bed and cuddle with Zoe to make her comfortable. And then the sweet woman didn't flinch a bit as Zoe happily kicked her legs as she kicked happily as she watched the flat screen with Mickey Mouse Clubhouse, each time kneeing the ultrasound wand and requiring the sonographer to reposition.

Then we returned to the exam room, and I got to put Zoe back in her clothes. (That's my favorite part of every doctor's visit. I hate for them to be so exposed and naked in the office, and it makes my heart happy to dress them again.)

It had already been a wonderful visit before Dr. M came in, smiling with the news that we never needed to come back. We got wonderful pictures, he said, and her heart is perfect.

(Side note: a friend pointed out to me that it's not uncommon for ASDs to heal on their own - about 20% heal in the first year of life. No matter how common, though, our girl had a hole in her heart - a.hole.in.her.heart. - that is not there anymore. That, my friends, is pretty awesome, even if it happens for 1 in 5 babies with her condition.)

When I asked if it would be okay for me to share his name with others in the adoption community who might need his advice, he invited me to ask for a card at the front desk and share his info with others. His words? "Just have them email me with any questions they have."

And then, as we walked out, one of the nurses who had admired Zoe asked, "When will we see her again?"

And I got to say, "never."

And you know what? It was a sweet enough visit, that I almost - only almost - felt a little sad when I said it.