Even before Giovanna arrived in our home, we knew that we would be dealing with medical issues as she had some physical issues that were problematic. We have spent many hours talking with doctors, in waiting rooms and long hospital stays. But this has given us some great rewards. Once told that this child would never walk, she is now walking, running, dancing and riding a bike! She hardly stays still for very long!
The physical issues have for the most part been dealt with and I am reminded over and over again that the body is “fearfully and wonderfully made” by a master designer. It is complex and no one here on earth can truly understand it unless God grants special insight.
Giovanna has a condition called Arthrogryposis Multiplex Congentia. Arthrogryposis is a term used to describe a number of rare, non-progressive conditions characterized by stiff joints and abnormal muscle development.
What Causes Arthrogryposis?
The exact cause of arthrogryposis is unknown, though a number of different theories have been proposed. Some believe that arthrogryposis is caused by mechanical obstruction to intrauterine movement during pregnancy. Others believe that it may be a result of early viral infection during development. Still others believe that it is the result of failure of the central nervous system and/or muscular system to develop appropriately (which can be due to exposure to drugs or alcohol during the pregnancy. It is not thought to be genetic or hereditary.
These kids are smart and very adaptable. However Giovanna is not a typical child with arthrogryposis. She is considered to be mild to medium in her condition. The typical child can not move an affected joint more than 10-15 degrees in any direction and it tends to be extremely painful. Giovanna can physically be manipulated through a full range of motion and it is not painful for her, but virtually every joint in her body is affected.
She has been atypical in other ways as well. She has struggled to learn many things like English, reading and basic math. Academics have not been easy for her and she has not progressed as one normally does. Even those that have been working with her for several years can not explain what is going on and have not come up with a plan of attack that seems to work for the long haul.
Then there have been behavioral issues on top of all that which seem to ebb and flow, but never truly go away or change significantly. They are beginning to become problematic and the older kids seem to be struggling more now with some of these issues, especially since there does not seem to be improvement.
Deep down a mom knows when something is not right and begins to dig deep to find answers. Sometimes it means bringing in specialists to help determine the root causes and come up with suggestions that can help for the long haul. After watching Giovanna struggle with so many issues over the past years and seeing little progress, I began to think that there is more going on. The questions that I began to ask and the answers I was getting were not ones that any parent wants to ask or hear the answers – but ones that needs to be asked and answered.
So knowing that I would need help in finding the root cause, I called the University of Minnesota Pediatric Neuro Psych department and got an appointment. It was with some fear and trembling that I took her to that appointment – actually 2 appointments which totaled about 6 hours of testing for Giovanna, an hour or so of evaluating the results and another hour or so explaining the results to Gary and I. It was a hard couple of days and the results were not easy to hear.
We are still waiting for the final report, but here is the overview of what we heard a week ago;
*Giovanna has some significant issues with the central nervous system. The actual cause of these issues is not easily determined since we have no medical information from the birth mom. But based on where she was born and what was seen during the testing, there is some brain damage which could have been caused by “high fevers during pregnancy that were not treated, seizure activity or more likely exposure to opium or Heroin during the pregnancy.”
*Her executive function is significantly impaired. Executive function is a term psychologists use to describe the many tasks our brains perform that are necessary to think, act and solve problems. Executive function includes tasks that help us learn new information, remember and retrieve information we have learned in the past and use this information to solve problems of everyday life. Executive Function helps us to anticipate consequences and to choose the most appropriate behavior. We have seen a lack of these things in her life and now know that due to the exposure to drugs while in the womb, this may never develop fully and will cause issues for the rest of her life, unless the Lord intervenes in a miraculous way.
*Her attention span is 5 minutes or less. We have been encouraged to consider using medication to lengthen this out.
*She still comes across as a native Chinese speaker when she speaks English. This is “very striking” since she never spoke the language and has been in a rich English language environment for the past 8 years.
There is much to process and pray through. My emotions have been barely under the surface and tend to come out at the most inopportune times (at least from my perspective). There is much to grieve in this process of learning, but there is much to hope for as well. God, in His infinite wisdom has placed her in this family and as I struggle with how to teach her, what to teach her, feeling totally overwhelmed at times, this song has been especially meaningful as I have reflected on the news of last week and all the implications of it. It is a song by Kutless called All Who Are Thirsty.All who are thirsty, All who are weak Come to the fountain, dip your heart in the stream of life Let the pain and sorrow be washed away In the waves of His mercy As deep cries out to deep Come Lord Jesus come Come Holy Spirit, Come