Tuesday, April 21, 2009


Keegan's follow-up appointment was pushed to tomorrow. Monday was a state holiday (Patriot's Day, running of the Boston Marathon), so the hospital was actually closed. Preliminary reports from Keegan's liver biopsy came back this afternoon, but we don't know much about them. Our doctor said there were some things to recheck and follow up on, so we'll learn the full deal tomorrow afternoon at our appointment. Additional testing should be back tomorrow. We won't be able to see our doctor until about 4pm EST because he is actually the inpatient attending this week. We'll have labs tomorrow also. We'll be sure to post when we have more information.

Keegan seems to be feeling better, but he's still struggling with some abnormal stooling. We are praying that he gets back to his version of normal soon. Today was a rainy, muggy mess of a day, so we just chilled inside. Daddy and Keegan are sporting their matching Red Sox gear today - will post a pic of that soon! Tomorrow I think we're going to take a Duck Tour of Boston before our clinic appointment. The remaining days of the week are supposed to be beautiful, so we are hoping to check off the remaining siteseeing items on our list while Daddy is here. It looks like the earliest we could make it home is the beginning of next week, or at least, we hope it is the latest we could be home because our apartment lease is up next Wednesday!

To wrap up this post, I thought I'd post an essay I first ran across courtesy of our congenital heart defect support group back home. I have seen it several times lately, and it is such a good expression of life as the parents of a medically-special (yes, I made that up, but it fits, no?) child. Keegan is such a blessing, and I try to make that my focus on the days that his "special" aspects seem so trying. I don't know that anyone with a normal, healthy child can ever truly understand this, but we truly appreciate you trying and praying.


When you're going to have a baby, it's like planning a fabulous vacation trip- to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

By Emily Perl Kingsley, 1987.