Urgent Aging Out Child: YouYou

February 26, 2017 0 Comments

YouYou is 13 years old and has a year left until he ages out from the adoption program. His file reveals that he was found around his 3rd birthday. With testing, it was determined that he has Thalassemia. He receives transfusions every 1-2 months.

YouYou is a curious and attentive boy. He is very interactive and engaged in all activities. He seems to be very sweet and empathetic. He is eager to play and even seems to like some competition when playing sports. YouYou is eager to play with other children. He is also a little bit ticklish! He has a great sense of humor and is very smiley. YouYou loves to draw and paint and play sports, especially football. He also enjoys reading books. He states that his favorite food is noodles with vegetables and cabbage. His favorite color is sky blue. He is afraid of the dark. YouYou can tie his shoes and easily fasten zippers and buttons. He is totally independent with all self-care skills- he even makes his own bed! He lives in the orphanage. YouYou can do basic math, including addition, subtraction, multiplication, and division. He can repeat a pattern of 8 colored shapes from memory, after seeing the pattern. YouYou is in 7th grade. His grades are 90+ but his best subject is math. Staff report his overall development on par with other children his age.

YouYou is initially shy, but becomes very talkative as he warms up. He answers all questions with long sentences with substantial content. YouYou can speak Mandarin and also the local dialect. He reads and writes. Even his teacher reports that he is ‘chatty.’ YouYou has great balance. He can sand on a balance board for several minutes adjusting his stance to maintain his balance. He can stand 5 seconds on his right leg and 10 seconds on his left. He enjoys ball and can throw and catch the ball across a room. He can do 3 jumping jacks with good form and easily skips and walks.

YouYou is listed with Gladney as part of the former shared list kids program. His file is eligible to be transferred to any agency with a qualified family ready to submit a letter of intent. YouYou needs to find a family or he will most certainly pass away at a very young age. In the United States, he would be transfused at least every two to three weeks, possibly even more often the first 1-3 months home to help regulate him. There are agencies which would offer a grant for YouYou’s adoption, such as Madison Adoption Associates ($3,000 agency grant), WACAP ($4,000 promise child grant to an eligible family), and possibly others. YouYou has about 11 months left to find a family and for them to get to China in time.

Interested families may contact April Uduhiri or Brooke H for more information. We cannot let this sweet boy age out- he could have a much longer and happier life in a family and he deserves that!

Strength for the Journey: Adopting a Child with Complex Heart Defects

February 26, 2017 0 Comments

I was just able to sit down with a cup of hot tea on a cold and lazy Saturday afternoon, relishing in the quiet and calm. Also know as, daddy is home so he is dodging toddlers and taking care of farm animals while I hide in his office to write this article. With six kids, four under the age of six, it’s pretty busy around here most of the time.

To prepare to write, I was looking back over blog entries and Facebook posts over the last couple of years. Amazing how much we forget. We are always quick to judge the Israelites and how quickly they strayed, how quickly they forgot what they had seen. I say I would have never forgotten about God’s miracles as quickly as they did… but well… I’m pretty sure I would have.

I know that the Lord’s hand has been heavy on our family since we brought Journey Mei home 6 months ago, but the details… oh the details… I had forgotten so quickly. I am so thankful for this opportunity to share what the Lord has done in our lives and so thankful that I took the time to document it before so I could look back now and in the future.

Really the entire story of how Journey Mei found us and how we were led to adopt her is really amazing. Maybe I can share that another time. But since it’s heart month, I think I’ll just stick to the dramatic details and heart wrenching story of trying to fix our daughter’s little broken heart.

Wang Shao Mei was born in China with CHD, a complex heart defect. Her specific situation doesn’t really have a name, it has many names: single ventricle, heterotaxy, dextrocardia, pulmonary atresia, VSD, AV canal defect and interrupted inferior vena cava. (And I actually think there is more but that’s all I had written down LOL) Honestly, there isn’t much about her heart that really works at all.

She was abandoned at just a few days old, and left alone and dying. I can’t imagine what that mother was thinking and feeling as she laid her baby down and walked away, holding on to a shred of hope that her child would be found, loved, and healed. I ache for her.

Thankfully, a wonderful foster home took “Mei” in at just a couple of weeks old, so blue, her heart failing, she was fighting for her life. They sent her to the hospital immediately hoping and praying for a miracle. But a failed surgery led to months of critical sickness, despair and worry.

Then in June of 2015, advocates for the foster home were able to convince surgeons to try the surgery again, from a new direction. It didn’t fix Journey’s heart. Her heart can never be fixed. But each surgery has the chance to bring oxygen, life and buy some time. Which is what that surgery back in 2015 did. And at that point, after that surgery, the surgeons in China instructed her caregivers that they had done all they could. They had no more options for Journey. So she stayed in the foster home, and was loved and cared for, waiting for a family.

In July of 2016 we brought Journey Mei home from China, our beloved daughter. We had no expectations at all regarding her condition.

We knew from the very day we chose to pursue her file that her heart condition was critical, rare, and had a very low chance of any kind of repair. We were told we were “way down on the list”, and that several families were interested in her file. We decided that maybe it just wasn’t meant to be.

On the day we received the call that it had gotten down to us, we were the last hope for her, there was no one else in line, I called and spoke with a dear friend of mine who has a son with a very similar heart condition, searching for answers. Her son hasn’t been able to have much done to help his heart due to pulmonary issues, like Journey. But the day I talked to her, he had given his life to Christ, at 9 years old! This boy who almost died in China and then again here in the USA, was now a forgiven and cherished son of God the Almighty Father!

If we could just love Journey Mei long enough to share the love of Christ with her, to tell her about God’s loving kindness, to share the gospel with her…it would all be worth it. So, we cautiously contacted our son’s cardiologist.

We have a son we adopted in 2014 who also has CHD, not as rare or severe as Journey Mei’s, but we felt at least a little prepared because of that, and had been so blessed to work with the doctors at Children’s hospital in the past. The cardiologist looked over her file and medical records and, honestly, gave us very little hope. He said they would look at her when she got home, and give it their best shot, but from what they could see in her file, there didn’t seem to be many options.

Journey’s file stated that her pulmonary arteries were “negligible”. This was one of the main concerns from the beginning. A heart repair doesn’t do much good if the arteries can’t do their job. So we prayed. We prayed for over a year that the Lord would widen those arteries enough for them to be able to do something for her once she got here. It’s why the Chinese surgeons said they were done. Those arteries. They were too small to do anything.

After seeing our cardiologist for the first time, a heart cath was ordered and scheduled. It seems that heart caths are really the gold standard when finding out what’s really going on inside the heart. It’s the first thing they wanted to see when we brought our son home, and now again with Journey.

The morning of the heart cath we were praying again. Asking and expecting God to work in our daughter’s heart, to save her life, to perform a miracle. When the surgeon returned to go over the cath results, we were stunned. He said that he never expected the arteries to look that good from what he had seen in the files from China, and that there was a surgery, one surgery, that might, just might do her some good! God had changed the anatomy of her arteries! He had answered our prayers!

The details of this surgery were, to be honest, daunting. It is called a Kawashima. The hospital had only done this surgery a handful of times, versus the hundreds of times they had done other surgeries. The hospital stay would be lengthy, nearly a month, and from what they said, complications were extremely common.

I went home to read up as much as I could and honestly didn’t get anywhere. Medical articles about the surgery were hard to understand and other searches in heart groups didn’t get me anywhere. No one else’s children had had this surgery.

Which just left one thing to do, again. Pray.

So pray we did. We reached out to our church, our family and friends and people across the world to pray for Journey. We asked them specifically to pray for the surgeons and to pray against the long hospital stay and complications. I wish I could say that I was filled with peace from the very beginning. But there were times when I literally asked my husband if we should even go through with it at all. I mean, Journey was doing ok, she was blue and she couldn’t walk very far, but she was alive! Dare we chance this risky procedure?

Honestly I was scared to death and it came down to the fact that my husband felt like it was the right thing to do, so I just trusted his leadership.

Surgery day came and went and Journey exceeded every expectation of ours, of the doctors and nurses, and everyone she came in contact with! She was out of ICU in less than 24 hours. 24 hours! The nurses said over and over that they truly couldn’t believe what they were seeing! They said they had never seen a child recover from open heart surgery that fast, and had never even heard of a Kawashima!

We just told people over and over and over that it was ALL to the glory of God and to His honor. He was the One who orchestrated it all and brought about this miracle. The love and support that we received from so many people was overwhelming and so humbling. Surprises awaited us every day both at home, and at the hospital. Juggling five kids at home and one in the hospital is not easy by any means, but oh the blessings we received from our good, good, Father.

We would have never experienced any of that had we not trusted the LORD and followed His leading.

A month later we did make a trip to the ER after she developed a blood clot and fluid on her left lung. The doctors said they expected it and weren’t surprised. After a week in the hospital we came home having to do blood thinner shots twice a day and back on lasix. At first, we wanted to despair, but God was faithful. Journey Mei was a trooper like you’ve never seen. She cried for the first couple of shots and never looked back. Something I dreaded so badly…. I had talked to friends who had done the shots and cried through every single one. And only a couple of weeks later, the clot was gone. No more shots!

Our story with Journey isn’t done. It’s guaranteed that Journey’s heart will need more help from surgeons in order to “buy some more time”. But it’s taught me that the very things we fear the most are the things that help us to feel the Lord’s presence more than ever. And, most of the time, the expectations of what we fear are much worse than the actual thing itself.

It’s scary to consider adopting a child that you may not see grow up.
It’s scary to look around and see the stories of those who have loved and lost.
It’s frightening to think of going through that much only to let go.

But in these things, the Lord is molding us and teaching us and showing us more of Himself than we could ever have seen had we not taken the chance. And it’s not about us anyway. It’s about Him.

It’s HIS story.

– guest post by Gia: blog || instagram

Medical Crisis: Being Your Child’s Best Advocate

February 25, 2017 2 Comments

In the summer of 2016 we adopted our precious Sonnet. Her adoption was medically expedited due to her being profoundly malnourished. She was also diagnosed with cerebral palsy and overall global and cognitive delays. What we didn’t know about was the seizures. She was experiencing them the day we took custody of her, but the staff either didn’t realize what they were or wouldn’t acknowledge it.

We stayed in frequent contact with our international adoption clinic doctor the entire trip and had an appointment scheduled there with a neurologist shortly after arriving back in the United States. They were unable to make a definitive diagnosis, and the seizures got worse in spite of trying different common seizure medications.

By November, Sonnet was experiencing in excess of fifty seizures per day. After spending several hours in the emergency department she was transferred via ambulance to another campus of our children’s hospital where she was a patient for the next six days.

The seizures still continued every five to twenty minutes around the clock even after they’d tried two more additional medications. Then things got even worse when Sonnet presented with tachycardia (fast heart rate) and some respiratory distress. What followed was an entire day of test after test after test to determine if she had developed heart issues or an infection somewhere. (all tests eventually came back normal.)

Two days of no food and drug induced sleepiness to the extreme, left us really concerned. Sonnet was put on “special watch” with constant video monitoring, and they started to talk about ICU in our conversations. The dietician wanted to start a feeding tube. At this point the mama bear in me came out.

Sonnet had done nothing but decline since being in their care, and they seemed unable to hear me when I argued that the medicines were just making her worse. The feeding tube would be a step back for this previously starving child who actually loves to eat. Of course she wasn’t eating when she was so drugged up!

The next time the team rounded to our room I was ready.

(I’d brought the photo below up on my computer.)

I told them, “I didn’t go halfway around the world to bring Sonnet home just to die in an American hospital. She deserves better and we can do better. The bubbly child in this photo is who we are fighting for. This is who you need to get back.”

I don’t know if I heard audible gulps, or if it was just in my imagination, but things changed that day.

After refusing to let them give either of the two newest seizure medications again (these were the fourth and fifth different ones she had been given that did nothing for the seizures but gave more side effects) and begging them to find something better for her, they tried something different. They tried a medicine that isn’t largely prescribed for children… but it worked for Sonnet!

Then the rascal made the decision for the doctors the next morning and pulled out her own IV. The nurse wanted to replace it but agreed to wait for an hour until the doctors made their rounds. The dietician wanted it put back, but the doctors thought we ought to give her a chance to eat and drink on her own.

She was a champ. They issued the challenge and she conquered it!

On Wednesday the calorie count was only at 86. The dietician said she would have to eat an impossible (I thought) amount by lunchtime on Thursday to avoid the tube. But she did it! Her calorie count by then was nearly 1200! By this point Sonnet was back to herself. She was smiling and waving, and blowing kisses. Nurses actually began coming in our room just to see the transformation themselves!

As we were going through the discharge process, I thanked the doctors for working so hard to help Sonnet, and for putting up with me cause I knew it wasn’t easy at times. One of them replied that I was a “great advocate for Sonnet”. I told her that was a very polite way of putting it. She assured me that she was serious and not being facetious.

And that is what it comes down to as parents, isn’t it?

We simply do what needs to be done for our kids.

People tell me I’m so brave, but I’ll be honest. I’m not. I am somewhat of a coward really, and as human as anyone else. I don’t enjoy a medical crisis, and do enjoy my own bed. But the bottom line is that I love Sonnet fiercely and just do what has to be done to see that her life is as good as we can make it.

Sometimes with a medically needy child that means taking on the medical establishment to help them see that she isn’t “typical” and needs them to look outside the usual medicines. The typical ones didn’t work for her and she didn’t tolerate them either. True, the doctors have the education and at some point we do have to trust them and just go with it.

But no one knows your child as well as you do.

Yes, read any literature your physician makes available to you.
Yes, visit reputable websites and learn some more.
Yes, educate yourself on your child’s special needs.
Yes, educate yourself on all of their medications and the expected side effects.

But remember that no one loves your child as much as you do. Make the doctors see that this is a valuable life and you’re counting on them to come through.

It has now been three months since Sonnet has had a seizure. She has gained about fifteen pounds and is learning new skills quickly. See how much she has changed!

As I reflect back and see us as a family truly in crisis, I see where entire days just seemed to vanish as the doctors attempted to bring Sonnet back from (and I quote one of the neurologists) her “scary place”. I am tremendously grateful to family members, friends, and the medical staff who worked hard and tirelessly to bring our girl back to us.

What can others do to help in a time like this?

Many kindhearted people contacted me to ask, “Can I do anything for you?” and I appreciated that so much. But the funny thing is, when someone is truly in a crisis you can’t even think of what you need. Thankfully people jumped in and helped as their instincts told them. People helped in so many creative ways. It just what we needed!

I was a hot mess and am speaking truth when I tell you I simply wasn’t able to worry about my kids at home. My hours were consumed with getting Sonnet the help she needed, assisting or comforting during test after test after test, researching possible solutions on my own, and mundane things like figuring out what to eat to stay alive. Nope, not being dramatic.

So what were some of these things that were so helpful to us?

Two of my adult daughters and a neighbor jumped in. I didn’t need to be concerned about the five kids still at home. They were receiving loving care, and while not happy that I was gone, they weren’t the bundle of nerves I expected I might come home to. Some of them have considerable anxiety issues and this could have been so bad!

Friends jumped in to help those who were caring for the kids at home. Meals were delivered every night and continued through our first couple of days at home. I know it was such a relief to those caring for the other children to not have to worry about what to feed the mob at night.

A few days into our stay, Sonnet was in desperate need of a good bath. She had gone through two sessions of having leads glued into her hair and was just a stinky baby! I was shocked to find that the children’s hospital had nothing to offer for bathing someone with her needs. Our request for a bath chair resulted in a regular plastic chair with no supports or restraints.

Um… guys she usually can’t really sit up anyway, and is having seizures frequently!

I put out a call on Facebook for anyone local who could go to our house to pick up our Rifton Blue Wave chair so I could bathe her safely. Just moments later as I was making arrangements with a friend for the pick up, the adult daughter in charge at my house sent me a text that the chair had already been picked up by someone else. That fast. Two different people were ready to drop everything and make an hour round trip to drop the chair off for her! We used that chair a couple of times over the next few days and it made our stay so much more pleasant. What a huge blessing to have it brought to us, and so quickly.

While we weren’t allowed to have people up to our floor at the hospital, friends found creative ways to help. One out-of-state friend ordered a soft little doggy toy and balloons for Sonnet, and snacks for me from the gift shop and had them sent up. Once Sonnet was feeling better she spent hours playing with those balloons and is still snuggling with the stuffed dog at home.

Other friends sent up snacks, (who knew just figuring out what to eat was so hard?) and things like lip balm and lotions to make my creature comforts better. There was even ginger ball candy that was perfect for soothing my upset, nervous mama tummy. A couple of times when I was finding myself especially longing for a cup of good, strong coffee…one would -poof- appear via the concierge, having been dropped off by angels in the form of especially thoughtful friends.

Others sent notes of encouragement, posted their concern on my Facebook page, or sent text messages. It was so helpful to know that others genuinely care for Sonnet, and we weren’t in this alone.

And then there was the whole village of people who were praying for Sonnet.

From Facebook friends to other adoptive parents in the China groups, to in-real-life friends and their churches, to our pastors and the list goes on.

This was perhaps the biggest blessing to know people were praying.

I sincerely believe we witnessed a miracle that week. We had a desperately sick little girl on that Wednesday, and on Thursday she was on her way back to us.

What can you do yourself to prepare for a hospital stay?

I wasn’t sure that Sonnet would be admitted the day I took her to the emergency department, but suspected it could happen. What things did I deem necessary to take just in case?

I quickly packed a backpack with a couple of clothing changes for the both of us, some snacks, a one cup coffee maker (and noodle cups to go along with it too), and my computer and tablet with their chargers.

I left the backpack in the van, but it was there and ready to quickly go into the back of the ambulance with us when we were transferred.

Helpful hint: If you have a medically needy child, keep a stash of portable foods that can be packed quickly.

You likely won’t have the time or brain cells to think through what to grab. The clothes and snacks are obvious. I do most of my reading on a Kindle app on my tablet so it had to go. The computer was my primary way of communicating needs to friends. It was also super handy to provide children’s music (Sonnet has never been a fan of television but loves music) and some white noise for me when attempting to sleep at night.

The computer was invaluable for researching treatments, medications, and tests that were being run. But the biggest surprise use was having a nice, large photo of Sonnet handy to show them WHO they were really working for. She didn’t resemble herself at all during most of that week, and I truly think the turning point was when they glimpsed the real Sonnet.

All my words – describing how full of life she was before this happened – didn’t affect things as much as that one picture.

– guest post by Randi, mama to thirteen children, ages seven through thirty-five, and grandma to twelve, ages newborn through thirteen

Waiting Child Highlight: Evan

February 24, 2017 0 Comments

This cutie is Evan. Evan was estimated to be 4 years old when he was abandoned. He is now believed to be six, soon to turn seven. His abandonment was likely due to the high cost of blood transfusions, which he needs to treat his medical condition of Thalassemia. We are guessing that his family …Read More

Homeschooling Your Adopted Child: 8 Steps to Get Started

February 22, 2017 0 Comments

“There is no school equal to a decent home and no teacher equal to a virtuous parent.” ~ Gandhi home·school·ing ˈhōmˌsko͞oling/ (noun): the education of children at home by their parents. The definition of homeschooling is fairly straightforward, but families who choose homeschooling as the best option for their adopted or special needs children can …Read More

Reluctant Spouses: His Perfect Timing

February 21, 2017 2 Comments

I was ready to adopt long before my husband was. More than ten years longer. It all started when I watched a documentary about the orphans and orphanages in China. My heart broke and I immediately felt compelled to adopt a little girl from China. My husband did not feel the same. I honestly could …Read More

Meant for This: Parenting Children with Complex Heart Defects

February 20, 2017 0 Comments

I want to start by saying that our miracle children astound me. We love them personally and uniquely. Their birthparents are revered in our home; we thank God they had the courage, strength, and compassion to have them and keep them safe. I married my college sweetheart. Kyle is way more incredible than me; I …Read More

Choosing Happiness Daily: Adopting a Child with an Unfixable Heart

February 19, 2017 1 Comments

One evening less than two months after bringing home our second son from China, I told my husband that I wished we could adopt an older child someday too. In both of our travel groups, there were older children who were adopted. These had made such an impact on my heart! They understood the idea …Read More

Waiting to be Chosen: Teddy

February 18, 2017 0 Comments

Teddy is a sweet and playful 4 year-old who is thriving in his foster family! He was abandoned in 2015 at a railroad station, yet was not speaking much at the time. Due to his lack of words, he was diagnosed with Autism upon intake. His agency visited with him this past October, and they …Read More

Yes, I Did. I Asked For This.

February 17, 2017 14 Comments

Someone finally said out loud what I assumed people might be thinking all along. I was asked, “How are you?” Careful not to ever come across as complaining about this beautiful mess God has called me to, I simply answered, “Good.” I never want to appear to have it all together (which isn’t hard); however, …Read More

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