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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