Thursday, March 28, 2013

A Little Too Cozy with My Genes

My business partner has a saying that he uses often in our team building and leadership activities with groups, "Trust the Process." Tracy usually shares this tidbit when the group is struggling through an activity or wondering how solving a puzzle will help the group form a more cohesive bond.

I am trying to keep this philosophy as we go through more tests to figure out what Ben's actual diagnosis may be. In my post, The Allusive Diagnosis, I mentioned that Ben's tests revealed a strange discovery - they located an abnormality on the X chromosome, one usually connected with Retts Syndrome. Last month at the geneticist's office, we learned that Ben's gene abnormality has never been seen before. I don't thing they mean, just in their office. I think they mean ever, anywhere.

This week, I was tested to see if I have the same abnormality. If I do, then "the waters are muddied," according to the doctor. It could mean that it is just an abnormality that has no significance. Or it could mean it affects him only. Hence the "muddied waters" analogy.

If I do not have this abnormality, then this finding could be significant. It could also lead to more tests.

There is an eight month wait for appointments with the pediatric geneticists in Charlotte. They saw us in one month and now we have another appointment in May. They also paid for my genetic testing because insurance denied the service. I think Ben may be an interesting case for the doctors.

I am trying to "Trust the Process", go slow and talk with Ryan through each discovery. It may lead nowhere or it could lead to something. We can stop the process at any point also. Just because a doctor suggests a test does not mean we have to follow-through with it. Weighing the benefits for Ben and our family and considering motives behind testing will come into play as we move ahead.

In any of these cases, we keep on doing what we are doing with Ben...make him work hard and love him lots.

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