Thursday, May 11, 2006

We're Home!

Our daughter's recovery has progressed enough for us to be discharged from inpatient rehab at the children's hospital. We returned home at about 5:00 PM on Wednesday. Her neurologist met with us that afternoon and indicated that upon further review, he and the neuroradiologist have agreed that the area of interest in her left brain is an abnormally large perivascular space rather than an old ischemic lesion. In other words, he now thinks her stroke is an isolated incident, albeit of unknown origin at this time, and that she likely does not have an underlying vascular disorder like MELAS or Moyamoya that would predispose her to future episodes. The MRI image above shows the feature that we now believe is the perivascular space, the light area inside the space is an artery that is highlighted by the MRI contrast material.

The neurologist said that the lesion in our daughter's right internal capsule is healing nicely. The following images are a series of 5mm coronal MRI slices showing how the lesion is resolving. I find it interesting that the most abnormal areas are now concentrated on the extreme upper and lower boundaries of the internal capsule, with the tissue in between appearing more normal:

Before we left the hospital yesterday we were privileged to see our daughter's roommate, going on 40 days in the hospital after suffering an acute viral illness that attacked her nerves and had left her completely paralyzed, take her first steps with the aid of a walker. It was thrilling for all to see, particularly for her parents and the caregivers who have worked tirelessly with her for many weeks. The two girls have become good friends over the past week and we hope to have a happy reunion with our families in a few more weeks once both girls are well enough. Our joy in leaving the hospital was tempered by the sadness of leaving our newfound friends and knowing that their difficult journey was not yet through. We continue to pray for this sweet little girl and her family that the remainder of her recovery will be quick and complete.

We're scheduled to start outpatient physical and occupational therapy next week. In the meantime, we have a notebook that explains some exercises our daughter can do to continue developing the strength in her arms and legs. This morning she announced that she was going to play a brief song on the piano that required the use of her left hand, and she did. We went swimming around mid-day and our daughter was thrilled that she could get around in the pool on her own. Her PT said that swimming will be excellent therapy because it will require the equal use of both arms and both legs.

We're due to follow up with the neurologist at the children's hospital in two weeks. In the meantime, we have arranged for a consult with an expert in pediatric cerebrovascular disease at the Stanford University School of Medicine early next week. We don't yet have a definitive answer as to why our daughter's stroke occurred, the possible reasons run the gamut from a freak accident to an insidious disease, and the consequences of a possible recurrence could be so devastating that it makes sense for us to consult with someone who is at the forefront of this area of medicine to make sure we're doing all we can for our daughter.

We've enjoyed spending the past 24 hours together as a family and trying to become re-acclimated to our "normal" life after a couple of weeks in a zombie state. We watched The Chronicles of Narnia together tonight, a gift to our daughter from a good family friend while she was in the hospital. Afterward my wife commented that she feels like we've just stumbled out of the wardrobe into our previous life after many years in Narnia. As a family we still look pretty much the same on the outside thanks to our daughter's miraculous recovery thus far, but there's no easy way to describe the breadth and depth of what we've just experienced and how it has changed us, individually and collectively.

Personally, I've told several people over the past week that I've come to appreciate the perspective that these events have lent to my life. I understand now better than I ever have before how wonderfully precious and fragile life is, and how the order that we strive to achieve in our lives can be illusory. Each of us is subject to a much greater power that can turn our world upside down in an instant. Some may call it luck, fate, chaos, nature, or karma. I believe it's the will of a loving God and Heavenly Father who is constantly trying to teach us, His children, how to become more like Him.

However you choose to explain it, you must concede that there is something much more powerful than you to which your very existence is subject. And that knowledge should inspire each of us to focus on the most important things in life while we have the power to do so, because in the end we have only limited control over where tomorrow will take us!


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