Thursday, May 18, 2006


Silly CostumesThings are slowly starting to get back to a steady state around our house. After two weeks of chaos our two children are starting to get back into a regular routine that resembles our life before our daughter's accident, including an appropriate measure of silliness as is depicted in the image above.

On Wednesday our daughter had her initial outpatient physical and occupational therapy evaluation at a local clinic that specializes in neuro rehab. Her therapist, a renowned expert in this field, spent a considerable amount of time observing our daughter at play and testing her function with a number of exercises. Here is a summary of her findings and recommendations:

  • Our daughter was able to perform all of the exercises and tasks that the therapist instructed her to do.
  • Some of the exercises that measured strength showed that our daughter's left arm and leg are not as strong as her right. Her left shoulder seems to be the weakest of her major muscle groups. Some timed exercises showed that she cannot perform tasks as quickly with her left hand as she can with her right. There seemed to be a slight proprioceptive deficit in her left hand/arm when she was asked to close her eyes and touch her nose with her left index finger.
  • The therapist saw no need for our daughter to return for PT/OT twice per week as was ordered by her physician on discharge from inpatient rehab. Instead she instructed us to have our daughter start gymnastics (for strength and balance training) and continue with swimming (specifically emphasizing the practice of all strokes to exercise all muscle groups) and piano lessons and return for another evaluation in one month.
  • Our daughter is to wear a mitten on her right hand for one hour a day during playtime to help improve the strength and dexterity in her left hand. This is a form of "constraint-induced therapy" that forces the brain to use the weak extremity rather than devising work-arounds. More aggressive CIT -- such as putting the strong arm in a cast for a period of time -- does not seem to be warranted at present.
Piano lessons are continuing, our daughter seems to be no worse off than she would have been otherwise considering that she hasn't practiced in two weeks. Swimming lessons start tomorrow with the same teacher that our children had during the winter months, and we are interested to get her opinion as to where our daughter is today versus where she left off a month or so ago. Gymnastics start next week. We're happy to be able to have our daughter do activities that she already knows and loves as part of her therapy.

Tonight two of my wife's friends brought our daughter a 1/8-size student violin as a gift. My wife and I have both studied violin and still play our instruments from time to time, and our daughter has been pleading with us to teach her to play, so she was thrilled to receive this gift. She's learned enough music theory studying the piano that she should be able to transfer her knowledge to the violin after learning some technique, which should help her regain more left arm strength and left hand dexterity. What a thoughtful gift from two friends who really know our little girl!

My wife and I have noticed that our daughter's physical recovery has proceeded with greater speed than that of her emotional recovery following this ordeal. Her two weeks in the hospital amount to nearly 1% of her young life, and probably a significantly greater proportion of the part of her life that she still remembers. We wonder: If we ourselves are struggling to put this event into perspective, how much more must she be struggling given her youth and limited experience with life?

She had been acting out a bit more than usual earlier this week, which posed a unique challenge for us as parents. How do we reconcile the need for discipline in a young child with natural permissiveness that stems from our sense of awe at what our child has just overcome, to say nothing of the possibility that her behavior may be directly attributable to effects of her stroke in the first place? We understand that her entire world has been turned upside down, and the fine line between empathy and enabling bad behavior can be difficult for us to discern.

We are grateful that her behavior seems to be normalizing. In the meantime, we've had ample opportunity to discuss with our daughter the reasons why she sometimes becomes so upset. Her insights have been surprising at times. For example, in one fit of frustration she said "Dad, I'm just really upset that I had a stroke." Another day this week she tipped over while seated on the carpet and gently bumped her head on the floor. As she lay there she was practically trembling with fear as she asked "Am I going to have another stroke?!" Earlier tonight she asked me "Dad, why does Heavenly Father sometimes let us get sick?" Our daughter may possess spiritual maturity and intelligence beyond her years, and she may now be neurologicaly normal or close enough thereunto, but it's obvious to us that some work remains to be done on our part to help her comprehend and accept what has happened to her over the past two weeks and how good her outlook is. We're working to take advantage of every teaching opportunity that we have to help her understand to the best of her ability.

On Tuesday I returned to work after an absence of 11 days, the most time I have spent away since I have been employed. In contrast with other vacations, this time off was unique in that I found myself totally unable to think about what might be going on at the office. My email went unread, my voicemail unheard, and my cell phone unanswered. My colleagues have been tremendously capable in covering for me while I have been away for so long, and I owe them a debt of gratitude for allowing me to focus on the welfare of my daughter and family without worrying about what was happening at the office. I've very much appreciated the words of encouragement, faith, and support that I have received from many current and former team members, clients, and partners since I have been back in the office this week. It's an honor to be part of an organization where everyone cares so much about each other.

On another personal note, it's likely that my blogging activity will diminish significantly beginning next week. Our daughter is doing well, so we anticipate that there will not be as much news to report. In addition, I will begin a two-year graduate program at The Wharton School this Sunday, which will require that I divert my energy from the the past two weeks' informal study of neuroscience to a much more formal regimen of courses in finance, economics, accounting, and management. The staff at Wharton have been very understanding of our daughter's health situation and would have allowed my wife and me the option of deferring my admission until next year if necessary, but our daughter's recovery has been so swift and so complete thus far that I'll be able to start class as scheduled, and for that we feel very blessed.

I appreciate all of the positive feedback that we have received about this blog over the past few weeks. It's certainly served its purpose to keep our daughter's many friends and family members informed about her condition, and writing it has been quite therapeutic for me as well. I hope that it will remain a resource for other families who may experience this type of event in the future. May God bless their children with as good an outcome as that of our daughter, and that they and their families might live to transcend this difficult experience and come to be known as much more than an individual or a family defined by a tragic illness.


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