Family Stories


At No Hands But Ours, we love family stories. Since our inception in 2008, we’ve featured a wide variety of family stories – and we continue to add new stories regularly. Please use the links in the right sidebar to click through to stories on specific special needs, or you can scroll down this main page to read all our family stories.

If you are home with your child from China, and would like to have your family story featured here, just use this form to let us know.


 


Doubly Blessed by PWS (Prader-Willi Syndrome)

November 12, 2017 by nohandsbutours 0 Comments

Hi, I’m Kallie. I am married to David, and we have two precious sons through adoption, Jahleel and Camden. Jahleel is five and a half years old and Camden is three and a half. Camden just came home from China this past spring.

Both our boys have diagnoses of Prader-Willi syndrome (PWS), but they present very differently. I requested to submit a story because I wanted to give PWS a voice in the adoption world.



I cannot introduce Camden without mentioning our oldest child, our first child and first adoption, Jahleel. Jahleel was born in Hong Kong and came home to us in 2014. At the time, he was two years old and we had a vague list of medical diagnoses. We knew he was struggling with severe developmental delays, could not be fed by mouth (g-tube only), and that his doctors there suspected a genetic syndrome. We eventually got a comprehensive diagnosis of a paternal 15q11.2-14 deletion, also known as “expanded Prader-Willi syndrome.”

Jahleel is one of only a few known cases of this in the world. He remains severely delayed, g-tube dependent, is non-mobile, non-verbal, and has quite the medical team of half a dozen therapists and about 20 doctors. Jahleel also has a beautiful, charming smile, the best laugh, loves going places, and endures his medical appointments and procedures with a positive attitude beyond his years. It is because of Jahleel and his brave, fighting spirit that we had the courage to move forward with Camden’s adoption.

We first heard about Camden in the spring of 2015. A friend of mine casually mentioned a sweet baby boy in China who had Prader-Willi syndrome (PWS) and needed a family. At the time, we were so overwhelmed with Jahleel’s emerging needs, we didn’t even consider another adoption. But we prayed for him, and I bookmarked his sweet little face. I knew that with a diagnosis of PWS, placement was going to be hard for him.

Over the summer, Jahleel’s “expanded” version of PWS was confirmed. Rather than being news to grieve over, it was a tremendous relief. It was assurance that Jahleel’s persistent medical and developmental struggles weren’t my fault – he is simply missing a very large amount of genetic material, making him unusually delayed in the PWS world.

That fall, we decided to move forward with a second adoption. At some point, I remembered Camden and looked him up again. He was still waiting. This time, it was different. God laid him heavily on my heart. I was constantly in prayer for him, could not sleep because his story weighed on me so much. We knew this special need, we knew why he still waited, and we had a sad, rough idea of what his future held if no family chose him. Sadly, the internet information on Prader-Willi syndrome is mostly out-of-date, and creates a very negative picture of PWS.

One day in December 2015, the words, “What if he’s still waiting because he’s ours?” flew out of my mouth, and that was it. We knew this diagnosis, we knew what specialists and tests were needed, where to go for good medical care, where to find good pediatric therapists. Our boys could even attend back-to-back doctors’ appointments or receive therapy jointly.

It was a little overwhelming to think about, but after considering everything we had learned through Jahleel, it felt right. God had equipped us with many of the tools needed to move forward with adopting Camden. We had some unexpected issues along the way that delayed the process, but I boarded a plane on April 16th, 2017, to bring our second son home.



I met Camden on April 19th in our hotel lobby in Fuzhou, Fujian, China.

Camden has been a joy from the start! He spent most of his life in China with a loving foster family. He is a secure, confident, social little guy, and was obviously well cared-for and thoroughly prepared for his adoption. We have seen very few signs of grief thus far, and attachment and bonding are going smoothly.



Developmental delays are par for the course with Prader-Willi syndrome. Low muscle tone (hypotonia) is one of the first signs of PWS and often leads to gross motor delays. We were pleasantly surprised to see that Camden was walking quite well at the time of his adoption. However, walking is just one piece of gross motor development. We still use a stroller or wheelchair for him sometimes, because with hypotonia, he fatigues very easily.

If you are around Camden long enough, you will see that his gait is abnormal and his balance is concerning. He got heavy-duty arch supports last summer, and those have helped noticeably. He is also getting PT twice per week. It was obvious from our pre-adoption reports that speech was going to be a struggle. Camden now has about 20 English words that he can say, but he does not use his words to communicate, just to label situations. And of course, with hypotonia, articulation is a struggle – usually only David and I can understand what he says.



Additionally, he has a very difficult time “turning on his voice” and getting words flowing. He just started speech therapy, and his therapist strongly agrees with my suspicion that Camden has apraxia of speech (also very common with PWS). Evaluations with our local school district are forthcoming this fall.

Medically, Prader-Willi syndrome is quite complex and affects multiple body systems. So far, Camden’s vision, hearing, and sleep study have checked out just fine (by comparison, Jahleel needs glasses, had ear tubes for years due to fluid buildup that was impeding his hearing, and has severe obstructive sleep apnea that requires BiPAP usage at max settings while sleeping). Camden does have a growth hormone deficiency, as expected, and should be able to start treatment for that soon. He also has scoliosis that is right on the brink of needing to be braced, so we will continue to monitor his spine closely.

Camden recently had an upper endoscopy done that showed clear evidence of esophageal reflux (GERD). We are in the process of treating that with medications now. Finally, we had one big, major orthopedic issue to work through when a routine abdominal x-ray showed that Camden had significant bilateral hip dysplasia. His femoral osteotomies were done on July 12th , and he spent 44 days in a spica cast afterward.



The hallmark symptom of PWS is the hunger. Somewhere between preschool age and adolescence, individuals with PWS slowly lose their ability to feel satiated and are painfully hungry. It’s not surprising that a strict diet and food security are crucial pieces of raising a child with Prader-Willi syndrome. Every child with PWS is a bit different, and because the syndrome is multi-staged, what works in early childhood may not work a few years later.

We chose to lock our cabinets and refrigerator before Camden came home, so that is established as normal for him. For now, what works well for Camden is mindful portions, nutrient-dense food, balanced meals, satiating food choices, and routine and structure around food. He also gets supplements that help maximize his satiety.

In China, Camden weighed 50 pounds at his visa medical appointment. Today, he weighs 37 pounds. It was not our goal for him to come down that rapidly, but once he started getting the diet he needed, he stopped clearing his plate and asking for snacks.

Camden’s activity level also increased with the diet change and weight loss, and getting his orthotics also helped him become more active. It is obvious by his demeanor that he feels so much better!



A diagnosis of Prader-Willi syndrome can be scary, but at the end of the day, it’s just a diagnosis.

The words “Prader-Willi syndrome” on his file didn’t tell us a lot of things…

It didn’t tell us that Camden was so confident and secure, how much he loves books, about his adorable little voice, his precious smile, his delightful personality, or the great hugs he gives.

It didn’t tell us how much Camden would love to help me with housework, or about his special bond with his brother and our dog – he has such a sweet, serving heart.

It didn’t tell us how much he would enjoy his therapies, or how determined he would be to walk again after his hip surgery.

And it didn’t tell us how excited Camden would get about “singing” along with the hymns at church or babbling along to the responsive prayers.



Adopting a second child with PWS was scary beforehand, but now we look at our adorable, smiling little guy and wonder what we could possibly have been afraid of!

For more information on Prader-Willi syndrome, please see the Foundation for Prader-Willi Research, or the Prader-Will Syndrome Association.

– guest post by Kallie

We Needed Him

November 10, 2017 by nohandsbutours 3 Comments

One year.

I still can’t believe it’s been an entire year since Brooks became ours…

One year since a tiny, pale, very sick little boy reached for two strangers in a musty Chinese conference room.
One year as a family of five.
One year of learning and adapting and fighting for a little boy born over 7,000 miles away from the place he now calls home.

I’ll never forget my husband tapping me on the shoulder that day as I was completing yet another form where I promised to take proper care of Brooks. Very calmly and quietly, he simply stated, “There he is.”

I looked up as three women breezed through the door carrying our 17-pound baby boy and headed straight for us. They knew exactly who they were looking for and within ten seconds of entering the room, one of his nannies was standing next to us. I barely had time to throw my husband’s phone at our guide so she could record the moment.

He then reached his arms out for me to hold him, and a collective “Awww!” filled the room from the nannies and other adoptive parents waiting to meet their children. His nannies smiled and reassured him as he began to interact with us. He had been dressed to the nines in a beautiful four-piece panda suit, with new shoes and carrying a favorite rattle. The nannies giggled as they shared with us that he had been saying “mama” and “baba” on the van ride to meet us, and they beamed with pride as our 13-month-old son showed off his skills as a new walker.

Fifteen months of paperwork, prayer, and tears were behind us, and our whole lives as his parents were beginning.



If I’m being honest, up until that meeting, I’d been terrified of this moment. I’d spent the last four months staring at the two pictures we had, re-reading all six pages of his paperwork, and trying desperately to create meaning out of each and every word we knew about him. I spent many countless nights staring at my bedroom ceiling worrying about whether or not his medical issues, which, according to the file, seemed so incredibly minor and insignificant, were actually accurate.

I had read so many stories of families who brought home very different children than they had expected, and I worried about all the things that his orphanage could’ve missed.
Would he attach easily?
How many therapies would he need?
Will his brother and sister accept him as their brother?
What will people say when they see a Chinese child with Caucasian parents?
How will we communicate with him?

The list went on and on.

I knew we’d been called to adoption, and I had a peace in my heart that this child was my son. None of that had ever been in question, but the fear of the unknown consumed me. On that day, in that stale conference room that reeked of burnt coffee and cigarettes, something in me changed. As that bundled baby boy accepted puff after puff after puff out of my hands, I felt myself slowly exhale. In that moment, I realized that he, just like my other two, was just a normal baby. He was going to do all of the typical baby things his brother and sister did, even if it looked a little bit different or happened on a different schedule. Developmental delays, premature birth, anemia… or not… he was just a little boy who needed a family.

Why had I been so afraid of him?

Over the last year, we’ve learned a lot about the little boy who once kept me up at night. He sings a mean Wheels on the Bus, points out every airplane that passes, and throws half his food on the floor, just like his older brother did. He loves candy, hates milk, and fights getting strapped into the car seat, just like his big sister did. He lives for goldfish and cars and says, “Mine!” if you try to take his toy, just like every other toddler I know.



The past year has been one of growth and change. We now manage Brooks’ asthma, which was a surprise to us, but after our initial few months home, we seemed to get in a groove with his medications. His head circumference, once a little bit of a concern to doctors, has leveled off and his anemia is completely gone. We are medically stable for the moment, and for that we are so grateful.

Today, Brooks is thriving in preschool and has begun naming colors, shapes, and engaging us in games and songs. He knows his mommy, daddy, brother, and sister, and we look forward to enrolling our strong little guy in gymnastics in the spring. He is the happiest and friendliest little guy you’ll ever meet and excels at greeting everyone he passes, stranger or not.



I think the biggest thing I’ve learned this year is simply this: we needed him. Not just another child… but him. When God called our family to adoption three years ago, I don’t believe it was for any other reason than for this boy.

Brooks completes our family in a way we never knew we needed, and I thank God every day for not letting my fear be bigger than my faith. He is our peacemaker, our funny guy, and lets his big sister smother him like the living baby doll she always wanted.

There were so many moments throughout our adoption process where I wanted to throw in the towel. Moments when the agency was invoicing us for more than what we had available to give them, or when the doctors told us his head circumference could indicate a neurological problem, or when we were asked yet again why we weren’t just trying for “our own” baby. It would’ve been easy to say no and walk away when things got tough, but I think back now at all we would’ve missed and am so glad we stayed the course.



Many people like to applaud us and tell us how lucky Brooks is to have us, but the truth is that we needed him much more than he ever needed us. He’s a gift to us, and one who is going to do big things in his life.

We’re just the lucky ones who get the front row seats.

– guest post by Allison: email || instagram || blog

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