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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!
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.
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.
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.
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.”
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.
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.
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.
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!
To learn more about spina bifida, be sure to check out the Spina Bifida Association’s website: http://spinabifidaassociation.org/
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 email@example.com.
There are still spots remaining for our 25th anniversary Disney Dream cruise! Don’t miss this opportunity to celebrate with all the CCAI Families, September 4-8, 2017. Book your cabin today at https://dazzlingdestinations.com/registration.php or contact Dazzling Destinations at firstname.lastname@example.org or 303-683-5098. Josh and Lily are excited to cruise with you all! #12000children25year
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.
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.
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.
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.
To other families considering neurological conditions, especially those that might sound scary, we would recommend:
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.
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.
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.
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.
We 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.
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!
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.
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.
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:
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.
We are definitely blessed. We did prepare for the problems that could exist…but we focused more on Harrison’s possibilities.
Happy 4th Birthday Harrison!
The journey begins with what is called “The Paper Chase” this is where we compile a small mountain of paperwork. Have it notarized, certified, and authenticated. When this is done the dossier is then sent to China and we begin the “Wait”.
March 1999 – We have made the decision to adopt a baby from China with CCAI! When we checked into adoption a few years ago, we found that we just couldn’t afford it at the time. We had given up hope of adopting. Maybe God just wasn’t ready for us to adopt. Like many, we were not looking to adopt when He was ready. We went to the local Family Expo put on by a local Christian radio station on the 14th of this month. There was a booth there that I originally thought was a Photo Studio. Since it had been a while since we had a family portrait taken, I went over to sign us up. Little did I know that I had just changed our lives. It was the Chinese Children Adoption International booth. I knew in my heart, as we talked to some very nice people, that this was the answer to our prayers. We have just finished our application and need to get it sent. We are also working on our INS form.March 22-30, 1999 – We took the family to Disney for Spring Break. Jeff had to go to Orlando for work, so our daughter, Cassie, and I decided that it would be fun to go. Jeff took a few days vacation. We all had a blast. I kept finding myself drawn into China at Epcot. What a wonderful place. I felt closer to our little one, so far away. Jeff’s conference was held the first 2 days, so Cassie and I stayed at the hotel and thought of names for her new sister. We came up with Victoria Jorene (Jorene after my mom.) When Cassie told her Dad, he agreed that it was a great name.
May 8, 1999 – We had our orentation class today on preparing our documents. We were able to hand in about half of the documents already: all of the ones for the INS. We have a few that will be going to China that we need to fax to our agency to get the O.K. on their wording, then we can send them to the Secretary of State for Certification. Then, when the INS sends us our final paper (the I-171H,) we will get all of the documents sent to the China Consulate. Our first Home Study appointment is May 23. We met our Social
Worker. She is very nice and we look forward to working with her. Today was the first time I was told “Congratulations, you are going to be a mommy again.” It was so wonderful, I cried a little on the way home. It is finally happening.
Aug. 18, 1999 – We received our Dossier from Carrie with Special Deliveries today we took it up to CCAI this afternoon. We were told that we would make the September DTC (Dossier To China). So in about six months we will be getting our match and see what our new baby will look like!!!! I can’t believe that we are finally done with the paper chase!!!!
Welcome to the portion of our adoption that is fondly called “The Wait”. This is the longest part of the adoption process and is the hardest part for most people. We have basically done everything we can do and our Dossier has been sent to China. Now we wait for the Chinese Government to match us to our daughter.
Oct. 5, 1999 – We received a letter from CCAI that we have a DIC date of September 21, 1999. That is when our Dossier was logged into China and we are officially in the waiting line. Our agency is one of the only agencies that tells you when your dossier is logged in the CCAA. We are so excited.
May 23, 2000 – At 10:38 am we received the call from CCAI. We have a wonderful almost 8 month old baby girl waiting for us in the Jiangxi province in China!!!!!! Her name is Jiang Yong Yuan and the characters translate to “Forever Together”!!! We finally have a picture of Victoria Jorene!!!!!!!June 5, 2000 – Travel notices are in for the April groups. We maybe hearing soon when we will be going. I can’t believe how fast time is going. I am having so much fun shopping and getting things to pack. COME ON TIME JUST KEEP MOVING ON!!!!
June 12, 2000 – I mailed our little ones care package to day. Just thinking about her holding her toys and blanket makes me tear up. I just love that little face so much!!!
June 27, 2000 – We received more pictures of Vickie today. We are so blessed to have such a caring orphanage to be sending use pictures and a letter telling us about our wonderful new daughter. I just can’t wait to go get her and finally be able to hold and cuddle her.
We are finally getting closer to travel. We hope to get our travel papers very soon!!!!
July 5, 2000 – I talked to CCAI and the Travel Notices haven’t came yet they will be checking to see where they are!
July 12, 2000 – We found out the delay in our travel is because our acceptance letters were lost on someone’s desk for two weeks. I don’t know if they will give Vickie to someone else or not!!!! I am so scared.
July 13, 2000 – We received an update from Thomas at CCAI for Vickie she is still ours!!! I am so happy!! She is just going into 6-9 month clothes they sent us her schedule and her likes and dislikes! They also said that she has a strong will and doesn’t like strangers. I think we will have a fun time the first few days in China.
July 19, 2000 – CCAI received some travel notices today not ours but for the ones ahead of us. Soon I hope we will receive ours.
July 21, 2000 – On the CCAI web page they say that our travel notices will be mailed on Monday!!
July 25, 2000 – CCAI notifies us that our travel notices were mailed last Friday the 21st. Wahoo!!!! We are finally closer. CCAI says that we may have a shorter time from receipt of travel notices to travel but I don’t care!!
August 4, 2000 – Our Travel Notices are here!!!!! We should hear something soon about our exact travel dates!!!!
August 9, 2000 – Wahoo !!! We leave next week!!!!! Our travel dates are from the 16th through the 1st of Sept. We are coming Vickie Jo!!! We started out on Wednesday, August 16 with a flight to LA. We stayed at the Ramada hotel and enjoyed taking showers and eating drinks with ice in them. Because we knew that we wouldn’t be able to once we were in China. We met some of our travel group that was also staying at the same
hotel. These people who were strangers would soon become family.
August 17-18, 2000 – The next morning we started meeting up with parts of our group. We were all very excited and nervous. We met the Sagely family when they arrived, leaving our luggage with the rest of our group in the international lounge. We took quite a bit of it with eight families. There were a total of 19 of us in group 213. Our flight left for Hong Kong at 2:45 PM on Thursday. For most of the flight Jeff and I stayed awake! Since we had the last rows in plane we were able to stand and walk around. Cassie tried to stay awake but went to sleep about 6 hours into the flight. We were able to look out the window flying over Alaska and saw some icebergs. During the flight, we had a great time getting to know our travel mates. We arrived in Hong Kong at 8:45 p.m. on Friday night and were met by Matthew who got us to the Shangri-La Hotel. Wow, what a place! It was so beautiful. We all were so tired that most of us didn’t realize how truly beautiful it was until the next day.
August 19, 2000 – After breakfast, we took a walking tour on our own along the bay, then meet back at the hotel with Matthew to tour Hong Kong. We went to the top of Victoria peak and saw many wonderful things along the way. We were all amazed at the cemetery, and at the fact that burial sites in China are only purchased for a temporary burial. We also loved seeing all of the Chinese children. But we were just getting a taste of China traffic! We also learned a lot about the Chinese traditions!
August 20, 2000 – In the morning Joanna met us and she helped us get to the airport on time. She also taught us some Chinese that our daughters would know like Hello, Thank you, I love you, Mama, Daddy, Grandma, Grandpa for both sets and Aunt and Uncle. We had so much fun that the bus ride was over before it began. We left at 12:45 p.m. for Nanchang! We were all so excited we would get the babies today! James met us at the airport and got us safely to the Jinfeng Hotel. I have never seen such traffic in my life. James said that he would call us when the babies arrived. At 2:30 some of the babies arrived but we were told when we arrived at James’ room that the Yongxiu babies would be arriving later. We were so happy for the others in our group, but a little sad that we had to wait. It was wonderful to watch our friends become families with their new little ones.
We received the call at 5:00 PM that Vickie was here!!! We rushed down to James’ room, with all of the families either all coming back or sending someone to take pictures. Michelle and Tony’s oldest son, Brandon, took pictures for us. We were the second of the three families to get our daughter and I couldn’t believe when they handed her to me. The minute she realized her nanny had disappeared she let us all know that she wasn’t happy! We received wonderful gifts from the orphanage (clay pottery, red bag of dirt from the orphanage grounds, and her story written in Chinese on a red handkerchief.) We went back to our room to change her clothes and put her in her first diaper! This was fun for us, but she didn’t like the diaper at all. She let us feed her an 8 ounce bottle of formula, and finally cried herself to sleep at about 8:00 PM. We called her Grammy and Grandpa to let them know she had arrived. She is so wonderful!
Fast forward to today!
May 27, 2017 – Today Victoria walks the stage at High School, I can’t believe the amazing young woman she has turned into. I am so proud of her, and all that she has accomplished. She will soon leave for a college visit trips in California. Thank you CCAI for making our lives so full and complete!