Friday, March 13, 2015

What Makes Faith Special? - Special Needs Adoption

When we announced our intent to adopt internationally we also let it be known that we were going through China's Special Needs Program. However, once we were matched with Faith, I never really explained what her specific special needs are and a lot of people have been curious. Before we met her, I felt funny about sharing much of her needs since I didn't even know her myself yet. Also, sometimes, you are told a child has a need and then once you have that chid you realize that the need isn't there or is something different all together. I decided I would wait to describe her needs on the blog until after we had her in our arms. Since we have been home I have been so busy, that I haven't really had time to write it all out. But now, I feel like it is time.

Faith was born with club feet and malformed fingers. We now know that these are part of a full diagnosis of Distal-Arthrogryposis.

Arthrogryposis is a condition that causes joints to be stiff and crooked at birth. Many of the joints in her feet and fingers lack normal range of motion, these are called joint contractures. Club foot is a common deformity of the feet of babies born with arthrogryposis. Because of her club feet, Faith only recently started walking. When she walks, she walks on the side of her feet.

When Faith was about a year old, she was prepped to have surgery on her feet to correct them. When they were getting her ready, they discovered that she also had Hirschsprung's Disease. Hirschsprung's is a disorder of the abdomen where all or part of the nerves in the large intestine do not function. Before her foot surgery, they had to remove a large portion (possibly all) of her large intestine. Because of her shortened colon, Faith's body has trouble absorbing all of her nutrients. It is very easily maintained with a careful diet. Her colon issues have not been that big of a difficulty, Praise the Lord!

Here is Faith after her first foot and colon surgery.

On Thursday, March 5th, we braved the icy roads to go to Dallas' Scottish Rite Hospital for Children to have a consultation about Faith's hands and feet.

First, we saw the hand specialist. She had x-rays taken of her hands, and we saw the Occupational Therapist. Faith's fingers curve out toward the outside of her hands on both sides, but she has good strength and movement. Right now, all she needs for her hands are some stretches and exercises.

Working with the Occupational Therapist:

Next, we saw a nurse practitioner about Faith's feet. She was certain that Faith would need something more done about her feet. While we were waiting to see the doctor, we asked permission to have a picnic lunch in the exam room. All of the kids (and mommy and daddy, too) were starved!

Soon the doctor came in. She examined Faith's feet and told us our options. Option 1 was that Faith could have another major foot surgery. The other option she gave us was to do what is called the Ponseti Method. In this method of treatment, gentle manipulation and casting is performed on a bi-weekly basis. The casts would cover her legs from her foot to her hips and would hold the foot in the corrected position, allowing it to gradually re-shape. She went on to tell us that Faith would need 6 casts. After the 6th casting, Faith would then undergo a small surgery to lengthen her Achilles Tendon. After the surgery, she will remain in casts for 4 weeks to let the tendon heal. Then, once those casts come off she will only need a brace at night. 

We chose option 2. Because of the icy roads, most people had cancelled their appointments that day which meant, there was a spot for Faith to get the casts that day! So we went straight from her appointment to the casting room! 

They let Gabe assist in putting on Faith's casts:

She did very well while they were casting her legs.

Once they had the casts on, her doctor said she did so well and she was able to rotate her foot so much this first cast that she doesn't think it will take 6 casts to correct! YAY!!

Faith's club feet, hands and her intestinal issues are how she was classified as a "Special Needs Adoption" through China. But, they aren't what make her special. What makes her special is her tenacity, her spunk, the way her eyes sparkle when she is really happy, the way she doesn't let anything -not even full length casts on both legs - hold her back. What makes her special is the way she captivates everyone she meets. She is special because she is a survivor and because she has determination like only one person I have ever known,  her Papa Serna. But mostly she is special because she is a child of God and I know He has BIG plans for this special little girl!
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