Adopteen Summer 2017 Recap

Adopteen’s 2017 summer programming closed out last weekend when both the Adopteen Wilmington leadership team and our Zhuzhou AGBOST landed home safely.  This year was an overwhelming success, and the summer passed in a whirlwind of beautiful memories and amazing new friendships.

Adopteen Colorado Camp-Conference 2017

In June, Adopteen came back to Colorful Colorado from June 21st-25th after a gap year in 2016.  Though it was our 6th (!) conference in Colorado, it was our very first time in downtown Denver, and we had a blast!  The highlight of camp was absolutely exploring 16th Street Mall, and packing every camper into a couple cars on the train to get there.  We also visited Water World, took part in some late night team competitions, cheered on our camp leaders in an…interesting…eating competition, and took part in workshops such as Adoption 101, Dance, Self-Confidence, and so much more.  We packed our Denver schedule full to bursting, and are so grateful to every camper that stuck it out with us and enjoyed every minute.  In all, Adopteen Denver brought us 74 campers with 12 camp leaders, representing 19 different states, 20 birth provinces, and 2 birth countries.

Adopteen North Carolina Camp-Conference 2017

July brought Adopteen Wilmington, with 70 campers and 8 camp leaders, representing 23 states, 15 birth provinces, and 2 birth countries.  In Wilmington, we had the chance to visit the beach and boardwalk area, as well as to explore downtown after an amazing ghost tour.  Though it was rainy most of the time, the area decided to give us a reprieve just in time for the last day of camp – our beach day!  We had an amazing time, and cannot extend enough thanks to the fantastic team at UNC, our local volunteers, and everyone that came – it’s always hectic bringing everything that we do out of state, and our team in Wilmington knocked it out of the park!

AGBOST Yueyang 2017

Of course,we would be remiss to not mention the entire month that Amy spent in China!  2017 was the first year that we have had two summer AGBOST trips, and as ever, it was an unforgettable experience.  Both trips were in Hunan, the first at Yueyang Social Welfare Institute from 6/28 to 7/8 and the second from 7/12 to 7/22 at Zhuzhou Social Welfare Institute.  Our travelers (48 total, with 18 from Hunan!)were amazing, embracing the call to service and together this year’s AGBOST brought in over $20,000 in donations for the Yueyang and Zhuzhou orphanages, which will go towards large capital improvements for the buildings.  Our travelers in Hunan became best friends with every kid they worked with, and we couldn’t possibly be more proud of them. (Check out the end-of-the-year CCAI Circle Newletter for more photos!)

AGBOST Zhuzhou 2017

Thank you to everyone that made our Summer 2017 such a success – we really, truly, could not have done it without each and every one of you.     In all, we met 129 new friends, while 83 of you decided to join us yet again.  We hope that every single one of you will hang out with us again in 2018, when we will celebrate our TEN YEAR anniversary.  Look out for announcements on our upcoming programs in October!  We miss you all and cannot wait to do it all over again.

~ Your Adopteen Team

JCCC Chinese Immersion Summer Camps

This summer JCCC hosted 61 students total at our Chinese Immersion Summer Camps! There were four camp sessions total, spanning from June 21 to July 28. We had campers come from as close as Denver to as far as Wyoming. Camp activities included Chinese-style morning exercises, Chinese cooking, and integrated Mandarin learning through words phrases and songs. Each 5-day camp went on a field trip to the Pacific Ocean Marketplace, followed by a dim-sum lunch at Kings Land Chinese Seafood Restaurant. Each camp was concluded by a final performance for the parents, where campers showcased everything they learned. The final performances consisted of many performances such as dancing to the famous Chinese pop song “Little Apple,” reciting Chinese poems, and performing a Chinese fan dance. We had so much fun with all of our campers, and hope to see them all and many more next year!

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Medical Monday – Tebben Family

Happy #MedicalMonday! Hope you all are having a great summer so far! This week we have the Tebben family sharing their story:

“Although this condition was not on our original MCC, we saw both of our kids being advocated for, read about them and saw what potential they could have in a family with health care available and a country with good accessibility. The gap between ‘what is’ and ‘what could be’ was just too large and we could not walk away from their files and sweet faces.

For Spina Bifida it really is all the unknowns. But as I grew a network of families and other people that had experience, I gained more knowledge about potential issues and treatments or management of their condition. Having a circle of people walking the same road is critical. And knowledge is power. I am not a nurse with medical training. I learned as I went, one step at a time.

They both go to the Mayo Clinic’s Spina Bifida Clinic to see a team of doctors to meet their needs and management. After getting the immediate things dealt (tests, examinations, MRI, xrays) now we are mostly on a ‘every 6 month’ schedule. There are surgeries and issues that pop up that take us back more often at times.

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We have a two story home but the only modification we have made is a ramp in our garage and converted our first floor office into a bedroom.

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The bad is that large nerve damage cannot be ‘undone’. If there is paralysis or incontinence, that will always be. But the good is there are many roads to manage these issues. Countries like the US are so handicap friendly for the most part. Many schools go to great lengths to accommodate for kids with disabilities. I have been amazed at the support we have received at our neighborhood school. We have received grants for a hand crank bicycle and plasma car for our daughter. There is a Family Wheelchair camp just 30 miles from our home. They take swimming lessons and baseball in the city’s Adaptive Parks and Rec. We have seen many needs met and it has only been a few years.

Both of our kids have adjusted very well. As mother and father, we have made great connections and bonding with them. They had a great year in Kindergarten and piano lessons too! They both picked up English very quickly. Our son had a speech issue that is already gone in one years time.

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Be prepared for the worst case scenario, but pray for the best. Gather your family or friends or church in support of your journey. Find out what is offered in your school and city for these kids. Network online for parent groups who are walking similar roads. Be prepared to be amazed by the strength, beauty and resilience of a child with a neurological condition.”

Medical Monday – The Sullivan Family

When we decided to adopt and add to our family, we were uncertain as to where to begin.  CCAI was excellent in guiding us through the process.  One of the more daunting tasks of the process was completing the medical checklist and deciding on the conditions that we were willing to adopt.  We decided to trust God and checked most of the boxes.  We have since adopted two children with spina bifida.  One has a malformed right leg with urinary difficulties.  The other has had a tethered cord repaired, walks with an altered gait, and requires braces to walk.

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Personally our decision to adopt Hudson and Anna Rae was made easier by the fact that we already have a niece with spina bifida and has had multiple surgeries, including an amputated leg.  As to our second adoption, we were warned about relapse fever.  When you are in China and see the overwhelming  need you can’t help but go back and adopt again.  The children at the orphanage competing for your  attention caused us to want to pick up all the children and take them with us.  As a result, we went back a year later to adopt Anna Rae.

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The easy part of this is that children are tough and resilient.  Our children do not gripe and complain about their conditions and pains.  They are tough and determined.  The do not let their physical limitations deter them whatsoever.  The hard part was our feeling of inadequacy to take care of them.  Once you jump into taking care of them you realize it isn’t as hard as you thought.  Sure there are frequent detours to the restroom with one, and Deborah has learned to catheterize our daughter three times daily.  Other than some minor inconveniences,  it is really not that difficult.  The good outweighs all of the bad.  It is part of our lives as much as it is theirs.

We also think it is crucial to have good friend and family support.  Hudson has had four surgeries and Anna Rae has had two.  The outside support was helpful during the hospitalization, especially as it concerns our other children getting to and from practices, school and etc.

With much support offered through God, friends, family, and other resources, we have found that there is nothing to be scared of concerning a medical condition.  If our children can live with the condition, then the least we can do is find the best help for them and love them unconditionally.  Ultimately, that is all they really want anyway.

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To address their medical conditions, we contacted our local Children’s Hospital of Birmingham to begin treatment for both.  Our local pediatrician and friend who has also adopted four from China, Dr. Jason Ayres,  guided us to certain doctors and paths to take. The hospital has a spina bifida clinic that allows us to see a neurologist, urologist, orthopedic surgeon, and physical therapist all at the same time.  They each have a team of doctors that see them periodically to assist in their treatment and growth.  Hudson has had two repairs to his spinal cord and two surgeries to address his bilateral club feet.  With Anna Rae, the doctors initially recommended amputation of her malformed leg.  We have since then partnered up with Rubin Institute for Advanced Orthopedics to reconstruct and reposition her foot.  Later we will look at a leg lengthening procedure to balance out the difference.  Again, it has been amazing how little they have griped about the pain and discomfort.

Both children have adjusted quite well.  Of course, it wasn’t overnight.  They are shy when introduced to strangers,  and one of them still likes to be by our side all the time.

I can’t say how thankful we are to have been chosen to be their parents.  Stepping outside our comfort zone and trusting in our faith is how we brought two home in a little over a year.  Were there hardships? Sure.  Plenty of them.  When we look at the big picture though, we see how much they have added to our family, and life without them would not be complete.  Our advice to any family thinking about adopting a child with neurological needs is to not let fear keep you from doing it.  They teach us much more than we can ever teach them. Choose life!

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To learn more about spina bifida, be sure to check out the Spina Bifida Association’s website: http://spinabifidaassociation.org/

Charity Department Update

Happy Friday, CCAI! The charity team at CCAI is always working hard to make a difference in the lives of children. We are excited to share these pictures of recent donations received by our dedicated and generous supporters. The staff at one of our Lily Orphan Care Centers received new uniforms, looking good ladies! Another LOCC received bright colored sofas and large toys for the kiddos to play on. We were also, very fortunate enough to receive 6 seater strollers for all those cute kiddos! We can’t forget about our older kids at the Wuwei orphanage who got all new bedding supplies, which they all love. A church and adoptee group sent over 20 sweaters, hats, socks and creams to the kids with more sweaters on their way to Henan orphanages. Last but not least, we had a family make over 400 blankets and will go to 9 different orphanages! Our charity team has been busy and we love it!

For more information on these and other projects, please contact our charity team at charity@ccaifamily.org.

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Medical Monday – Wisor Family

When we sat down to complete our MCC in the Summer of 2015, we marked “no” to every condition listed under the “neurological condition” heading. While we were confident in our ability to parent and care for a child with medical needs; neurological needs terrified us. Despite our fear, a few months later a picture and story on CCAI’s Special Focus page captured our hearts. His diagnosis was meningocele, a form of Spina Bifida. We requested his file and when it came to us time was of the essence! We received it on a Thursday and CCAI was scheduled to return the file the following Monday. After a talk with our pediatrician and a physician who is both a family friend and a parent through adoption, we were sure that we had the resources and ability to care for our soon to be son, Eli. We realized that we had many family members and friends who had experienced back and neck surgery and suddenly a spinal need didn’t seem nearly as scary. We excitedly submitted our PA the following Monday.

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Eli was 4 ½ by our Family Day on August 1, 2016. While we were in China, we were concerned about his mobility because it seemed that he fell constantly. His core and legs were weak and his balance was poor. By the time we flew home, he was covered in bumps and bruises from all of the spills he took in-country.

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Almost immediately after we got home, our pediatrician sent us to the Spina Bifida Clinic in Hershey, PA. They are amazing! Eli goes there once a year to be seen by the specialists who help monitor his condition: urologist, orthopedist, neurologist, and occupational therapist as well as a Social Worker who assists in coordinating his care. Hershey helped us get set-up with physical therapy once a week close to our home through IU. Care through IU means that during the school year, the physical therapist sees Eli during school which makes scheduling a snap! He has improved so much that his therapy is now being reduced to once every 10 to 14 days and he was even able to play T-ball this past Spring. Although his gait is still a little abnormal, we expect that soon he will progress so far that he will no longer qualify for therapy. Eli is a happy, confident, energetic little guy who loves to go and is always eager for a new adventure (and rarely falls)! He loves to run and jump and play with his big brother. Any day spent outside is a great day in Eli’s opinion. Eli hasn’t just adjusted well, he has blossomed! His doctors and occupational therapist are all amazed at how far he has come in the past year.

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The hardest part of living with Eli’s diagnosis is in knowing that his physical condition could worsen at any time. By worsen, we mean a loss of function for his lower extremities, bowels, or bladder. As is typical of children with Eli’s diagnosis, he has the secondary diagnosis of Tethered Spine from the scar tissue resulting from the surgery to repair the meningocele sac on his back. While Eli’s neurologist is confident that any future loss of function caused by the tethering can likely be reversed with surgery, we know that we are waiting for a back surgery someday in the future as Eli grows and the nerves in his spine get stretched. While we have every confidence in Eli’s neurologist and Eli’s ability to recover from the surgery, it’s difficult as a parent to know that the pain of such a difficult surgery is likely in our son’s future.

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To other families considering neurological conditions, especially those that might sound scary, we would recommend:

  • Be honest with yourselves and what you think your family’s ability and resources will allow you to handle and where your limitations lie. Don’t feel the least bit guilty for your honesty.
  • Talk to trusted doctors; talk to professionals across a variety of fields that can help you understand the medical facts for the condition(s) that you are considering. Spina Bifida and conditions like it are common enough that finding experienced specialists shouldn’t be difficult at all.
  • Beyond doctors – talk to parents! Parents of children with medical needs are living the life that you are considering. We can help you step out of just the clinical fact sheets and see what living this life is like.
  • Educate yourself about conditions and possible outcomes; prepare for the hardships and speed bumps along the way, but don’t allow that to make you lose sight of your child’s potential!

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We are beyond thankful that we didn’t let our fear stand between us and this life. Eli doesn’t let anything hold him back and we’re so glad that we didn’t either. Eli is a joy and a blessing with a zest for life that is contagious. To anyone even passively considering a Spina Bifida diagnosis, we want to say that Spina Bifida doesn’t run our life; it’s just a side note to the bigger story of our lives together.

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Summertime Visitors

Happy Friday CCAI Family! We love summertime around the office especially when our families come visit us!
 
Thank you to G377 for stopping in to say hi. From June 2002 to June 2017, the girls might have gotten older, but their friendship continues to grow. We hope to see you this summer!
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Medical Monday and Happy Birthday Harrison!

Our desire to grow our family started with us filling out a very open MCC list.  As we reviewed the files of a couple of precious kiddos,  we were able to learn more about ourselves and how we could best meet the needs of a child we were to parent. Having an actual child’s file with real needs was able to push our thinking beyond what filling out a check box and reading a summary of medical conditions was able to do. We were able to visualize how our gifts, strengths, and challenges fit with a particular need and how our daily lives would need to be modified to accommodate a child so the child could thrive.  This introspective process caused us to do some MCC updates! We removed several conditions and added others!

Harrison, currently 33 months old at the time, had a medical file listing conclusions and suggestions as a child with delayed motion, language and intelligence development, developmental delay of brain (or some places indicated poor brain development). What did that even mean? That sounds so scary? Where do you start on evaluating his needs?  We took a deep breath and began to focus less on the diagnosis and more on the available information and on his physical condition and needs.

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We utilized the International Adoption Clinic at Cincinnati Children’s hospital to evaluate medical files. We found using professionals in adoption medicine that have access to experts in all types of medical specialties to be invaluable in navigation and assessment of a child’s medical needs. There were some inconsistencies in his file and the findings. The file indicated he was premature; however he was over 8 pounds at birth. The file indicated he had just learned to walk; yet, the doctors reviewing indicated the child in the video was much more adept and confident with his walking skills than a child that had only learned a month or so.

His file evaluation of motor skills, adaptability, and language and social skills showed some delays but were very encouraging.

The most difficult part of adopting a child with a known medical condition is the Internet!   (And the uncertainty of really any “knowns”). Until we had Harrison in our arms and our sight for our own observations and had his physical evaluations with medical professionals;   our minds would go wild with the “what ifs” and “if thens”. I spent so many nights, before our travel, developing my own internet based treatment plans for my sweet boy. A “googling” parent is a dangerous thing.  I have found that the unknowns are much more difficult for me than the “knowns”.

What we did to address his medical needs:

We worked with the International Adoption Clinic after the initial evaluation to develop a course of action for once we returned home from China. Prior to travel, I contacted our local pediatrician and a Neurodevelopmental Pediatrician at Duke Medical Center to set up appointments.

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Harrison was timid and fearful on Gotcha Day but generally content with snacks and my husband or I carrying him. Immediately, we noticed his core strength was weak and he had difficultly navigating any uneven walking surface (slight incline, crack in the side walk, curb, threshold, etc.). When we bathed him later than day, he noticeably lacked core strength and seemed very frail and weak.

He was falling down very frequently throughout the day. He wasn’t yet able to run, skip, or jump. He was constantly falling down. Everywhere, he was falling down all the time. Was this a gross motor skill deficit or delay, neurological, nutritional deficit, what was going on? However, every day he was stronger and acquiring new skills, every minute of every day.

Carter_10We adopted our daughter Olivia at the same time (they are 2 months apart in age) so we did have some comparison. However, she was living in a foster family for the last two years and he was living in the orphanage.  She was noticeable stronger and more confident as well as much more vocal and verbal. We knew she was speaking Mandarin; but, we didn’t know exactly what she was saying! According to his file, Harrison only spoke a word or two in Mandarin. Were these delays due to institutional living, were they deficits due to “poor brain development”, intelligence?  We didn’t know.  We tried to not compare the two and let them develop and grow as individuals in their own time. That is definitely easier said than done.

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Harrison was stronger and more confident with each passing day. His language began increasing quite literally day one in China. He was repeating words, approximating syllables. He was running within a few weeks and within a month this timid, fearful child was jumping!  And so happy to be jumping! This accomplishment may have been one of the times I have seen him the most proud of himself. He is still thrilled to have others watch him jump! Jump Harrison Jump!

Neurodevelopmental evaluations lead to no immediate concerns.   He is inquisitive, bright, learns easily and is curious about the world around him. He is very typical in his cognitive development and skill acquisition. His gross motor skills and fine motor skills had caught up significantly and drastically in our few months as a family. As suspected, we should evaluate his speech. A Mandarin interpreter was brought in to assist in the evaluation conducted at Duke Medical Center (six months home from China). The evaluation determined he was acquiring the English language and had only two sounds that exist in Mandarin and English that he should have mastered but had not.  His receptive language skills were very strong. Speech Therapy was not recommended at that time. The recommendation was to re-evaluate after 12 months. We are currently approaching that. He may need some therapy to assist with his pronunciation of some sounds. He is saying multiple word phrases and is attempting syllable approximation with words and phrases.  I understand probably 90% of what he tells us. If you know him well you probably can interpret 60% or so of what he talking about.  Harrison LOVES to talk.   He gets lots of practice with the “talkers” at our house!

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He loves to SING even more! He doesn’t sing particularly on key. But, neither do I really.  He sounds beautiful to me and makes everyone around him happy! A good day always includes singing and a dance party.

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This sounds so simple and easy as I review my writing. The truth is there were many appointments over many months. We have also been referred to a Pediatric Geneticist to have some precautionary testing; however, this is a 12-18 month wait for an appointment.  We are still waiting.

The “good and the bad’ of having a somewhat ambiguous diagnosis is trying to prepare and educate yourself on the possibilities. It’s good to have somewhere to start; but the name or characteristics of a condition are just that. It’s not the whole of your child. It’s the problem, not the possibility.

Every child is more than a few words on a page describing a condition.

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Harrison has gone from a timed, shy, fearful, frail child to a giggly affectionate little boy who loves life and is rambunctious and feisty. He is playful and loving and can’t get enough hugs and kisses from mom! This took time. Early on he didn’t really know how to show affection. He has definitely decided that hugs, kisses, and snuggles are the way to go and if he could stay physically attached to mom twenty-four hours a day he would do just that! I have been so thankful for this bonding. However, when you are bonding with another child adopted at the same time and actually need to shower once in while (which Harrison also just decides he will shower with me if given the choice); this level of attachment can be challenging. I have learned to wash my hair with one hand and hold him with the other. This little lovebug has a lot of time to make up for and I don’t want him to miss any more minutes of feeling the affection of someone who loves him I will take that kind of challenge any day!

I would encourage another family considering a child with poor brain development or delayed development to:

  • Understand yourself, your spouse, and your family’s strengths, goals, capabilities and limitations (physical, emotional, financial, proximity to resources, etc.).
  • Enlist the opinions of professionals in the field that can assist you with understanding the medical facts and developmental conditions of the child you are considering.
  • Understand the highest level of support that may be necessary given the information you are provided.
  • Determine if that level of support for the most conservative development outcome is in line with your family’s attributes and abilities.
  • Imagine the child’s possibilities.
  • Celebrate the successes. The little ones, the big ones.  Every milestone is important!

Were we just extremely fortunate or lucky? Perhaps. People are constantly shocked that either of our adopted children were in a special needs or medical category.

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We are definitely blessed. We did prepare for the problems that could exist…but we focused more on Harrison’s possibilities.

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Happy 4th Birthday Harrison!