Tuesday, May 16, 2006

Back from Stanford

At the Stanford ClinicWe returned home from our trip to Stanford a couple of hours ago. Our flight was delayed by bad weather on the East coast this morning, but that was the only bad news of the day.

Our daughter and I took a flight early this morning to the Bay Area while my wife stayed at home with our son. We spent most of the day waiting in airports, on airplanes, and in the doctor's clinic, but the wait was worthwhile. Here are some of the high points of the visit:

  • Our daughter does not have Moyamoya disease. The doctor we consulted with today is perhaps the leading expert in Moyamoya and other cerebrovascular diseases in the United States and he gave her a clean bill of health. Specifically, he said that her MRA shows vessels that are so clean that there isn't even reason to do additional testing.
  • Aside from the obvious evidence of stroke in our daughter's most-recent MRI (one week old), there were no neurological findings in today's evaluation that would have indicated she had suffered a stroke. Her recovery has progressed to the extent that this expert could not detect any impariment at all.
  • The doctor concurred with the previous interpretation of the most-recent MRI that the feature of interest in the left internal capsule is an abnormally large perivascular space rather than an old ischemic lesion. This well-informed opinion strengthens the case that our daughter does not suffer from an underlying pathology that has caused multiple ischemic strokes in the past and would therefore predispose her to suffering another one in the future.
  • The doctor said that the trauma of our daughter's fall indeed could have caused her stroke through an arterial spasm or similar physiological result of the injury, but we cannot prove that to be the case. That conclusion becomes much more likely if we can exclude other pathologies, including blood and vascular disorders, and if she was neurologically normal in the time immediately prior to her accident. I should add that tests for blood disorders have been ongoing since three days after her stroke, and all of the tests have come back negative (normal) to date.
  • The doctor confirmed that, assuming that the trauma caused our daughter's stroke, she does not have an increased likelihood of suffering another one in the future.

It is impossible for me to express the gratitude we feel at receiving this news. It's everything we've hoped and prayed for during the past two weeks since we learned of our daughter's stroke and all of the terrible illnesses that could have caused this event.

We are due to begin outpatient physical and occupational therapy this week and follow up with our local pediatric neurologist within two weeks. While the clinical team at Stanford did not detect any impairment in our daughter in today's evaluation, my brief experience is that the therapists are much more thorough than physicians and nurses! We still notice a few little things that she struggles with, for example: She can't walk in flip-flops because her left foot and leg are not strong enough to grip the sandal with her toes. She has some anxiety about swimming without a float, presumably because she can still perceive some weakness persisting in her left side. And she's still very excited about riding her bike again once we receive the all-clear from her doctor.

Considering where she's been in the past two weeks, we're thrilled with how far she's come even if these few little remaining problems are never resolved. We feel as though we've been taken to the brink of something terrible, dangled over the edge for a few weeks to experience what it would be like, and then mercifully (and quickly) pulled back to the relative comfort and ease of our prior state.

But I can't say that we're comfortable or at ease any more. We're shell-shocked by what we've experienced. We can't quite seem to comprehend it yet. As much as our life may seem to have returned to normal from the outside looking in, it's different in ways that are difficult to describe yet very real to each of us. I hope the passage of time will lend clarity to this perspective that I'll be able to share in the future. In the meantime, we're striving to make gratitude our overriding sentiment.


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