Friday, October 31, 2014

What, me worry?

A child with disabilities delivers concerns to the parents that not only relate to him/her personally. Parents young enough to expand their family and eager to do so face a fraught decision after the birth: should we risk having another afflicted baby? Often genetics do not provide a clear answer - either soon or ever.

On the other hand, when parents are at the end of their child-bearing years, they are spared that ordeal. 

C., as our seventh child arrived at that stage in our lives and my relief on that score was palpable.

But it was short-lived. It emerges that nobody is spared that dread. Now, with every one of our children's pregnancies, I am gripped by the fear of abnormalities. Even after the birth I scrutinize the babies for the slightest sign of a problem. It's only after several milestones are under his/her belt that I begin to relax.

But now, with our most recent arrival, the nightmares are real. This grand-daughter has what's been described as a mild case of aplasia cutis congenita. The proper care of the ulcer is crucial as it could lead to serious complications. That's not to mention the fact that, in 30% of cases, this anomaly is a symptom of some serious neurological syndrome. She will have a brain ultrasound in ten days to learn more about her neurological health.

Then came the absence of bowel movements. But, hey, that's common in breastfed babies I read everywhere and assured my son and daughter in law.  Even ten days without one is fine. But when that deadline came and went, it was off to the pediatrician who diagnosed anal stenosis.

But we can handle that, right? Just a visit to the pediatric surgeon, some dilation and voila, she'll be good as new. Well, the surgeon, who hasn't examined her yet, was contacted by the pediatrician because the baby also vomited two days ago. So at his urging she is now in the emergency room where she will undergo tests, scans and other such goodies in order to determine whether we've got a case of Hirschsprung's Disease on our hands.

So no time to focus on C. or cannabis but, sshh, just between us: the number of seizures is down again...

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