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Not so much Birmingham. Or even Montgomery. We made it to Troy.

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It really was a simple enough plan. Ben was scheduled for a consult with the doctor on Thursday morning in Birmingham, AL and then surgery on Friday. The drive from Orlando to Birmingham should have taken 9-10 hours with breaks along the way. I had a hearty breakfast, knowing that I would be driving all day, and then went to pick up Ben and Sara. After some wrangling to get Ben out the door we were on our way north by 10:30. Smooth sailing!

Leaving for Birmingham

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Five months ago Ben got sick. Well, he was sick before that but not visibly so; it was five months ago that he wound up in the hospital with non-stop vomiting. Since then it has been multiple hospital stays, three endoscopic procedures, and months of waiting. Today we leave for Birmingham, Alabama to see a specialist. Friday Ben will have major abdominal surgery to remove part or all of his pancreas, and to transplant the islets into his liver.

A Week of Anticipation

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I really don't have much to write about this week, except to talk about the wait. Ben has been back to school, today is  his seventh consecutive school day. After being out for so long (basically from June of 2013 until January of 2014, so effectively seven full months) he is not performing well. He is physically able to make it through the day, but he steadfastly refuses to do any work. Some of that may be him being physically uncomfortable and worn out from the ongoing pancreatitis. Most of it, though, is just him being smart and cunning enough to pretend not to understand what his teachers ask of him. Tasks that he could easily complete in the classroom last spring he now pretends are insurmountable puzzles. He'll play "no habla englais" in one moment, and then when he thinks nobody is looking he will be visibly satisfied with his deception. He's not a dumb kid. But he is still miserable most of the time, with only tiny reserves of energy.

Turns Out Issac Newton Was Right

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I was dozing somewhere happily between sleep and wakefulness on Saturday afternoon when my wife nudged me, saying "Honey, I think you should take a look at these two holes in the wall in the guest room..."  

Happy New Year

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Happy 2014 to everyone. Nothing much new to report here. Ben is still very low energy, and in the last few days has acquired a rash all over his back and arms. So that's fun. If it hasn't cleared up by tomorrow then we are off to the doctor to have it looked at. He is still scheduled for surgery in Alabama on January 31st. We are counting the days.

Happy Birthday, Benjamin

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Today is Ben's 20th birthday. I know it's cliche, but it hardly seems possible that the little baby I used to be able to hold in the crook of my arm is now two decades old.

Current Update on Ben's Health

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I realized that I hadn't posted anything here since the end of November, so here is the short version:

Arranging for the surgery he needs has been a slow uphill battle. We were initially delayed by the Thanksgiving holiday, and then there was a SNAFU with the referral (it went to the surgeon's academic office instead of the clinic). Once we finally got the referral itself sorted out we had to iron out some insurance issues to do with taking him out of state for this procedure. As of today, that is all taken care of.

"Interesting" is a Scary Word

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Hoban 'Wash' Washburn: This landing is gonna get pretty interesting.
Capt. Malcolm Reynolds: Define "interesting".
Hoban 'Wash' Washburn: [deadpan] Oh God, oh God, we're all going to die?
 - from "Serenity"

Something you definitely never want to hear from a doctor, particularly a world-renowned surgeon, is "that's an interesting case." Unfortunately, that's what we heard last Friday after Ben's third (and ultimately fruitless) ERCP.


Our First Experience With Disney's New DAS Pogram

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It's pretty clear that Ben would never have reached 3,500 rides on Snow White's Scary Adventures without making use of the Guest Assistance Card (GAC) program. We can debate whether or not that's a good thing, but in any case it is safe to say that my family had extensive direct experience with the GAC over the course of ten years. In this last year we had almost completely weaned Ben off of using the card, because he has reached the point as a young adult where he is perfectly capable of standing in a line (both physically and emotionally). I count that as a success in and of itself. 

When Disney announced several months back that the GAC program would be phased out due to rampant abuse and replaced with a new Disability Access System (DAS), I was not particularly concerned about how it would affect our family. I had some worries about how it would affect the autism community in general, but for us at least it seemed that Ben had progressed beyond the point where he really needed it.  And then, back at the end of August, Ben got sick.

3500


ISBN: 1-482-09330-8

Benjamin's Lullaby

Popular Entries

There has been an influx of new readers to my blog. If you wound up here looking for stories about my son's ten year romance with Snow White's Scary Adventures, here are the major blog posts you will want to read:

SW1K - The Full Story

SW1K Redux

SW2K - The Full Story

SWSA Final Night - Prelude

SWSA Final Night, Part 1 - The Beginning of the End

SWSA Final Night, Part 2 - The Fairest One of All

SWSA Final Night, Part 3 - Counting Up, Counting Down

SWSA Final Night, Part 4 - The Big Ending

SWSA Final Night - Epilogue

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About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

Thank you for visiting my website.

Ben and Snow White

Ben and Snow White

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