Today, Lara and I took Daniel to a doctor's appointment at the Kluge Center, a children's rehabilitation clinic at the University of Virginia hospital. This was a referral made for us by the UVa neurologist who recently diagnosed Danny. (Lara is becoming quite familiar with the hour-long drive from Harrisonburg to Charlottesville, where most of the medical specialists are located.)
The pediatrician we saw today, who also happens to be the head of the clinic, told us much the same sort of thing that we've come to learn already -- that while Daniel's MRI clearly shows an abnormality, only his actual accomplishments will determine his future.
He's still so young that it's hard for anyone to determine just how Daniel's life will play out. Knowing his condition will help the doctors, therapists and us to keep an eye out for any special needs that may arise.
We will continue working with the occupational and physical therapists. We will follow up at the Kluge Center in six months. We will meet with a speech pathologist to evaluate his swallowing abilities. We will meet with an audiologist and ENT to evaluate his hearing. We will meet with a geneticist to learn whatever else we can about his condition that provide useful information in the future.
I feel like I'm repeating here some of the sentiments that Lara and I and our family and friends have posted to the blog. But today's doctor visit, combined with the routine events of daily living, have really helped to calm things down around here. I almost feel embarrassed that we responded so alarmingly to his diagnosis.
Certainly I appreciate all of the kind calls, emails and comments that we have received from our wonderful friends and family. This response, too, has really helped us to reach a calm, rational place.
In recent blog posts, Lara has poignantly mentioned some of things that Alison has recently said about Daniel, and we have often wondered how aware she is of his limitations. Earlier this evening, I asked Alison, "What do you think of your brother?"
Alison replied, "He's really cool."
1 comment:
I was just reading my own post, and I thought I would add that no one reading this should be concerned that Daniel is being subject to so many doctors and examinations.
For those of you who haven't yet met him, Daniel loves people. He gives big smiles to total strangers and will happily go to anyone who cares to hold him.
And though I haven't seen it myself, Lara tells me that Daniel is a flirt, with a particular affection for younger women doctors, nurses, etc. Sly devil.
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