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The Simplicity of Prosthesis

June 30, 2015 by nohandsbutours 0 Comments

That would probably not have been our reaction if you would have told us seven years ago that we would have multiple pairs of prosthetic legs in our house.

In early 2009, we were researching China’s special needs adoptions after adopting twice through the non-special needs program. Some of the special needs just looked too scary and seemed way beyond our family’s abilities. There is something about raising your hand and saying “we can handle that” versus a child being born into your family with special needs. It just seemed presumptuous somehow. Then as we looked over an agencies special focus group of children and watched the accompanying videos, we saw him. He was “eight years old and he can walk”. When the narrator of the video said that, we automatically glanced at his feet, well that was unusual, he didn’t seem to have any! Instead, it seemed that his legs were wrapped in ace-type bandages with no feet or shoes. 

The interviewer talked with him and he seemed engaged and confident, a bit different from the other young boys that were also interviewed. After the interview, he stood up on those wrapped limbs and walked across the room. We were intrigued and felt the urge to test the waters and see if China would allow us to adopt “one more time”. When we received his file, we found out that what had seemed to be foot-less legs were actually feet that had at one point been burned and the resulting contracture scars had distorted his feet allowing him to only walk on his heels. His right hand had also been burned and he had similar distorting scars on his right hand.

Fast forward to September 2010, we took four of our children and went to adopt Joseph. A friend had advised us to talk with the doctors at Shriner’s Hospital in Philadelphia. I emailed the pictures to one of the doctors and he said, “Yes we can help, set up an appointment when you get home.” (They now do in-take a bit differently) We had seen from his updated photos that China had crafted prosthesis for him, but we were curious as to how they would fit because we had the photos of his legs. 

We soon realized that his prosthesis were not made for walking or climbing. Every evening he had new blisters or raw spots to show us, we really were clueless how to make him more comfortable. I even had to try to buy bandaids and gauze in China. That was an interesting pantomime! Let’s just say the quality of their gauze wasn’t what I was used to.


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We were home a few months when we made our first trip to Shriner’s, and the doctors there convened and discussed treatment options. They and we finally came to a tough decision. We would wait awhile (no rush) and then amputate. Meanwhile they would build prosthesis that would fit around his legs. The new prosthesis extended up to his knees, his old ones only came mid-calf.    

The prosthesis leg is made of carbon fiber and very hard. The new legs were lined with a foam cushion; a removable plastic plate covered the front of his leg, allowing his real feet to fit inside his leg. The great thing from this mama’s point of view was his new posture. His injuries had left his one leg longer than the other, I could see all sorts of future hip and back trouble. The new legs leveled him up and gave him new stability. The frustrating thing about these legs was that we needed to keep a 4 mm allen wrench at school and in my wallet because the screws on his feet keep coming loose and he would lose a foot at the most inconvenient times! They told us that these feet were a temporary measure until he was ready to have the amputation surgery.


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We bonded, learned English, went to school, worked on bonding (yeah said that twice) and then reluctantly made the date for surgery for July 2011. We also had surgery for an external fixator on his hand in June in an attempt to give him some flexibility to his wrist.

A small piece of wisdom to help prepare you and your child for surgery, especially if they only have a small amount of English: teach them multiple words for the degrees of “hurt”. Pain management was a challenge in those days after surgery.

After about 10 weeks, he was fitted for new legs! It was really going to happen! He would really walk again! There was a time that he did not believe it would ever happen. During that time, he wore pressure socks to help shrink his leg as much as possible before the pattern was drafted. The new legs consisted of long stockings, sort of like tube socks, but more fitted. Then a foam liner is pulled into place over the socks, then that is pushed into the prosthetic. The fit is important because the “tightness” is really all that is holding the prosthesis in place. The socks come in various thicknesses but the goal is to be in the thinnest socks first and then have the option to add a sock to perfect the fit. 


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The first set of “real” prosthesis after surgery were expected to only fit him for about six months because his calf muscle was no longer used and would shrink over time. I think he wore up to four socks on each leg by the time the next set of legs was ready for him that summer. There were issues of skin breaking down, sore spots and bone overgrowth. The hardest thing was to make him understand that frequent washing (yes, everyday) was necessary for the health of his legs. His burn-scarred skin is supposedly more prone to blistering and other injuries and, a few times, he needed to bandage certain spots, but never needed to completely stop wearing the prosthesis.

The cool part of prosthesis is that you can decorate the leg part with fabric of your choosing. So he has had “wooden” legs, legs lined with basketball fabric, and his current legs are undecorated carbon fiber (looks like an expanded rope). 


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He pretty much participates in any sports he chooses and with practice and some PT has learned to walk smoothly and most people don’t think about his slightly different gait. Running is still a bit of a challenge and he will never be as fast as he would like. 

We usually try to time the fitting and manufacturing of the new prosthesis over summer vacation because it involves at least two, maybe more trips to Shriner’s for fittings. Occasionally, we ended up making more trips especially the spring that he broke his foot, twice. The prosthesist told us that it is very unusual for a teen of his weight to actually break the metal in the feet. After having him break feet the second spring in a row, they switched suppliers and so far, so good! We have an appointment for re-evaluation the first week of June, and I will have them checked then.

The cost of prosthetics is a consideration. We have not needed to pay for his prosthesis up to this point. Shriner’s has covered the cost, but after he turns 18 we will need to be sure to have insurance that assists in the coverage of prosthesis. After he is no longer growing, he should not need new prosthesis every year. There are grants available to help in the cost of “sports” legs, the famous blades, and different types of attachments for skiing or swim fins. Challenged Athletes Foundation is just one of the organizations that will help you wade through some of your questions.

From what I’ve observed, having only one prosthetic leg is not quite the same challenge as wearing two prosthetic legs. The site of the amputation affects the ease of adapting. The common amputation sites are ankle-level (known as Boyd or Symes amputation), transtibial (mid-calf) through the knee, and trans-femoral (above the knee). If the amputation is through or above the knee and the prosthetic requires a knee joint, it is more difficult for the patient to learn to walk again. Our son has a Symes amputation. Some children find it easier to walk without their prosthesis that has not been our experience.

As a special need, this is not considered a “simple” one. But, today we would consider the “older-child” part of the adoption as the most difficult part of our experience. The prosthesis are just a part of getting dressed though changing pants or shoes can be a slow process. In less than a year, he will be 16 and in PA that means one thing, LICENSE! That is going to present some challenges. So far, in our research it looks like he will need to get hand controls because he has bilateral amputations.

I would say that living with amputations is totally doable and the help of a good prosthesist makes life almost simple.

— guest post by Christine

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At NHBO, we love Family Stories. And we know our readers love them, too. Beyond being encouraging and informative, Family Stories shared here have actually resulted in children coming home to a forever family. If you’ve adopted a child through China’s special needs program, we hope you’ll consider sharing your family story. It just may be the reason another family considers that very special need.

Who Would Want a Dad Like Me?

June 30, 2015 by nohandsbutours 7 Comments

Finishing up our June Feature, Let’s Hear it For Dads, with a post by Mike, a former (and much-missed!) regular contributor. We at NHBO enjoyed this series so much that we are working on bringing in more “dad” voices. Because dads are awesome, too.
So grateful that Mike agreed to share this wit and wisdom with us once again – a perfect way to end a great month. You can read Mike’s previous posts here and the other posts in our Let’s Hear it For Dads series here.

………

There are a lot of areas in my life where I have relatively low personal standards (e.g. upper body strength, fashion, lawn maintenance, reality television, etc.), but parenting is not one of them. 

From the day we first saw two lines on a pregnancy test back in 2000, Anne and I have known what kind of parents we wanted to be. We didn’t want to be good parents.  We wanted to be GREAT.

I share this because I want you to understand how high our standards are… so you can fully appreciate how miserably far below them we have fallen over the last few months. 

It is one thing to fail at something where you’re not really trying that hard. It is far more indicting to fail spectacularly at something where you are genuinely trying to do your best…


mike4I love this picture of all six kids because you can see their smiling faces… and the hole on the front of Will’s shoes.


An Engineer’s Guide to Parenting and Adoption

While our family size has changed dramatically over the last 15 years, our commitment to great parenting has not.

And while a passion for parenting might help drive some people into adoption, it almost kept me out of it. 

I am an engineer, and I tend to think of the world in terms of limited resources to be carefully managed and budgeted. We only have so much time, so much money, so much energy, etc. Through this lens, life is a complicated equation to be solved and every adoption is rife with potential to disrupt a carefully crafted balance.

While I know that this logic is deeply flawed, these fears feel very real in the middle of the night when you wake up worried about whether this is the “one” that will cause the whole house of cards to collapse.

Is this the tipping point when I no longer have enough? Is this when I have to start limiting how much of myself I can give to each kid? Is this where I have to give up the goal of trying to be a great dad? Or in the worst case scenario, is this where I start failing to even be a good one?

As Anne and I prayerfully considered each adoption, this was one of our primary questions and focus areas. Can we do this without compromising our ability to be the kind of parents we want to be to ALL of our kids?

And what usually started with some very deep and emotional questions about love and attachment often ended with some very practical, functional… almost boring… answers.

We need “systems.” 

We recognized this early in our marriage. It only took a few tense exchanges at the mall or the grocery store in those early months for Anne and I to realize that we needed a budget. (In retrospect, it’s possible that I may have “realized” it a little bit earlier than Anne… and that might have contributed to the aforementioned tension.)

Early on in parenting, we identified a similar need for tools and guiding principles to help us stay focused on the important stuff and to help hold everything together. A quick look at our weekend “systems” would illustrate this. Every Friday night is “Jutt Night” where we all go out for dinner and then back home for milkshakes, dancing, and family prayer. Every Saturday night is a date for Anne and me, a chance to connect and regroup. Sunday mornings are for church, and Sunday nights feature our modern take on Sabbath: pizza and a movie on the red blanket in the family room. 

I am sure that the above list feels stifling to some of you, but to us… it just feels right. Our weekend traditions are a calendar embodiment of the kind of parents and family we want to be – time together, laughter, prayer, conversation. These are essential to what it means to be a Jutt.

We always valued traditions like Jutt Night, but their importance has only grown in proportion to our family size. They now represent a comforting anchor of calm and connectedness in an increasingly chaotic and disconnected world. These “systems” help insure that we maintain the heart of what it means to be a Jutt even as the literal picture of our family changes.

In a very real way, my ability to concretely picture an extra milkshake on Friday or slice of pizza on Sunday really helped me get comfortable with the idea of adopting more kids. Knowing that some things weren’t going to change helped me deal with the things that might.

4 + 1 = 5 (unless it equals 6)

When God asked us to consider a 5th child (and then snuck in her little brother at the last minute), we knew we would have to double-down on the “systems” if we were going to make it work.

Anne and I both dropped volunteer roles at church. We renewed our commitment to have dinner together as a family each night. We also re-avowed our disdain for Select Sports… declaring never to give up our family time in the evenings and on weekends to worship at the altar of Youth Soccer or Baseball.


mike3This picture embodies a fundamental conflict for me… both the shame of giving into Select Soccer and the joy of being #9’s dad


We cemented our decision to adopt Sam and Ellie when Anne found a set of six different-colored cups, plates, and flatware. Having assigned each kid their own designated color from the ROYGBIV dinnerware collection, we felt like the last piece was in place.

And for the first two years that Sam and Ellie were home, we actually did pretty well. We planned the work, and we worked the plan. 

Then came May.

Starting in early May of this year, everything stopped working. Jutt Night started getting interrupted by budding social lives and select soccer practices. (Did I forget to mention that we signed both Adam and Will up for Select Soccer?  Hypocrisy, anyone?) Family dinners became an exchange of Chick-Fil-A nuggets in the back of the minivan, and weekends became a game of divide-and-conquer with texts as a chief form of connection… primarily to insure that the right kid ended up at the right field or concert. To top it all off, our basement was under construction to add some additional bedrooms, and the pricetag was exploding way beyond the original budget. 

Every system we had so brilliantly conceived and painstakingly maintained began to break down. 

“Great” parenting was off the table, and “good” seemed to be at risk.

The Collapse

And all of this came to a head one Sunday morning in late May.

The load of eight bathers became too much for our under-sized water heater… resulting in three people screaming through ice cold showers.

We were hurrying out the door in an attempt to be “less late” to church than usual. (I gave up any delusions of being “on time” to church after kid #4. But to be honest, Anne and I tended to be late to church before we ever had kids, but they make a much more credible excuse.)

On our way out the door, I tripped on Sam while he was trying to put on his shoes. Already frustrated from the stress of the morning, I snapped at him for taking so long… only to have him respond that his shoes were too small and did not fit any more… a complaint I initially dismissed until I realized that his feet literally would not fit into his shoes. (This was not an issue for Will and Ellie because the holes in the front of their shoes were big enough to release some pressure.)

As we tried to squeeze eight people into an aging minivan, Mia started crying when her hand got pinched in one of the folding seats while trying to climb into the back row. I initially feared that her hand had been caught in the door when it was closing automatically… but I quickly realized that was not possible because our automatic doors had stopped working a few weeks earlier, a problem we were not budgeted to repair given the fact that any extra money was all going against our ballooning basement bill. 

Breakfast was a bag of barely thawed Blueberry Eggos flung like mini-frisbees to the kids while I tried to force the sliding door on our aging minivan to shut against its will. Meanwhile, Abby was trying to jam her enormous cello into the back of the van, but she couldn’t fit it around the piles of soccer-worshipping folding chairs and umbrellas. Ellie and Sam swallowed down their HIV medicine with Adam’s water bottle from the previous night’s out-of-town soccer tournament, and I remember thinking that its (unhygienic) presence in the car was one of the only things that had gone our way the whole morning. 

Our delinquency only got worse when I was reminded by Will that we needed after-game snacks for his game that afternoon… precipitating a U-turn into the Kroger parking lot so I could sprint in to grab 16 snack-sized Doritos and a small crate of lemon-lime Gatorade. 

At this point it felt silly to even keep going to church since half of our kids were wearing jerseys and cleats in anticipation of leaving early for the aforementioned games.

I was stressed and tired and mad… the picture of the kind of dad I never wanted to be.

And then it happened.

I heard Sam’s scratchy voice from the seat behind me.

“Dad, I need to tell you something.”

OK. Here it comes. Now is when he reveals how disappointed he is in me as his father. Now is when he begins to articulate all of the ways that I have failed to live up to the standards of what a father should be… his emotional scars from not co-sleeping, his stunted intellectual development because I let him play too many video games, his doomed athletic career because his shoes did not fit properly. It was all about to come out…and I deserved it.

At that moment, the frustration fell away and was replaced by a wave of disappointment… not in the kids, not in the situation… but in myself. This is not who I meant to be.

And so with a deep breath of resignation, I prepared to face the justified wrath of my youngest child. “Yes, Sam.  What do you want to tell me?”

“When me and Ellie was in China, I was wanting a dad like you.”

I must have misunderstood what he was saying. Perhaps he meant, “When I was in China, I wanted a REAL dad… not one like you” Or “You are such a bad father that I wish you lived in China.” Or even “When I was in China with NO dad, it was still better than the miserable job you are doing.”

And so I asked the question of clarification, “What did you say, Sam?”

“In China, I was wanting a dad like you.”

And then I turned around to look my boy in the eyes, and I started crying like an idiot. I cried because I still wasn’t sure the sliding door was really closed all the way. I cried because I was so stinking exhausted by soccer and by mud-tracking construction workers in my house. I cried because I was dying for a date with Anne. I cried because shampoo is much harder to make than you would probably guess. 


mike2The teenagers have started asking for bigger cups, but we are afraid to mess with the system. (Sam still seems pleased with his.)


But mostly I cried because my systems, my planning, my whole hope for pulling this thing off well had completely failed, and somehow this beautiful, scratchy-voiced boy (who was wearing his sister’s pink Crocs) wanted a dad like messed-up me.

Suddenly I saw the whole ridiculous mess for the beautiful dream-come-true that it really is. And then I cried some more, remembering that I almost said “no” to bringing them home because I was afraid of a day just like this one.

What a merciful, merciful God we serve.

He is before all things, and in him all things hold together. – Colossians 1:17

find my family: Lenny

June 30, 2015 by nohandsbutours 0 Comments

Precious little Lenny is 1 year old and is listed as a special focus file with Lifeline through an orphanage partnership. his special need is postoperative CHD.

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Lenny is a handsome little boy! When his caregivers speak to him he will smile and laugh! He can hold his own bottle and feed himself a biscuit without help. He can roll over freely and sit unassisted. He is described as an active and lovely little boy! He enjoys listening to music and being cuddled. Lenny lives in an institution blessed with a Half the Sky program in Eastern China.

Please watch his video. PW is Lenny

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Please keep in mind that several families may be reviewing this child’s file at one time. At any given time, this child’s file can go on hold or be taken back to the Shared List by the CCCWA. Please contact Lifeline for more information.

Let’s Hear it for the Dads

June 29, 2015 by nohandsbutours 0 Comments

mandy

Baba. Daddy. Dad. Your name is worthy of celebration. You are worthy of celebration.   Your name is powerful. For our children, your name means comfort, safety, strength. Perhaps you were the daddy that our child was scared of, and so lovingly and patiently, you pursued our little one. It took time, lots of time …Read More

find my family: Katie

June 28, 2015 by nohandsbutours 0 Comments

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Katie is, and always has been, a favorite at her orphanage! She was born in August of 2013 and found shortly after birth. Her file says, “the child is optimistic, has rich facial expression, the child has a ready smile, although there are so many small dark spots, this does not affect her lovely, she …Read More

God of My Children

June 27, 2015 by nohandsbutours 1 Comments

rebecca2

Ever learn something, quickly forget it, and need to be reminded again? During our daughter’s extensive surgery last November, God tapped into my medical momma’s fearful heart, comforting me with the revelation that I don’t have to be God of my children. It was a breakthrough parenting moment.  Little by little though, I again started mentally and …Read More

God’s Plans are Always Best

June 26, 2015 by nohandsbutours 0 Comments

suzanne

God’s plans are always best… even when we fight them. After years of dealing with infertility and finally placing our desire for children into the hands of our Father, He revealed that His plan A for us was adoption. When my husband and I first started our adoption process, we told our agency that we …Read More

Night and Day

June 25, 2015 by nohandsbutours 0 Comments

lanz

In the mid 1980’s our family adopted two biological brothers from the USA’s foster care system. Both were diagnosed with cerebral palsy. Fast forward to 2013 when we first adopted from China, cerebral palsy was a special need that was familiar to us and one we were confident in handling. According to CerebralPalsy.org, “Cerebral palsy …Read More

I’m Ready to Adopt: Choosing an Agency (Part 8)

June 25, 2015 by nohandsbutours 0 Comments

agencyfeatured

Today we’re back with our I’m Ready To Adopt series with the eighth in a 10 post mini-series by Kelly – who blogs at Mine In China – on How To Choose An Agency. You can find links to the previous posts here.   Financial Considerations   If you have stayed with me through this series it is likely that by now …Read More

Maddox Waits

June 24, 2015 by nohandsbutours 0 Comments

Meet Maddox who waits for a family of his very own. Six year old Maddox. Look how cute and sweet he is. Maddox is newly listed with Madison Adoption Associates. Not only is Maddox super handsome, but his caretakers describe him as smart and lovely. He was abandoned at about 3 years of age and …Read More

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