Collin Figley

Collin Wade Figley

This is a picture of my (Rob's) son Collin, taken May of 2004. In August of 2004, Collin was placed in a "Temporary-Long Term Foster Care" home in Shelton, Washington, about 140 miles north of Vancouver. To every one in Collin's community who has helped him along the way, you will be glad to know that he is growing and flourishing in his new surroundings. His new care givers love him to pieces, and who could ask for better?

Collin was born via emergency c-section on the 21st of December, 1995. His mother, Bonnie Hull Figley, had a normal pregnancy up to the 7th month, when a routine ultrasound showed that our future son was missing a right kidney. It was only a week or two later when Bonnie suddenly began to show signs of liver failure. At the time of Collin's birth, she was showing signs of jaundice.

The following three years were a blur doctor offices, hospitals, emergency rooms and therapy visits. As Bonnie's health went up and down, Collin's health was one disaster after another. At age 1 month, he was diagnosed with Familial Exudative Vitreoretinopathy, (FEVR) which had caused a golf ball sized tumor to grow in his right eye. The surgery to remove it was done just 3 weeks later at the Casey Eye Clinic in Portland. Although the tumor was removed, it had left Collin permanently blind in his right eye.

At age five months, Collin was diagnosed with craniosynostosis, a condition that stopped and misshaped the growth of his skull even as his brain kept growing. He began to show signs of having seizures. Surgery to correct the shape of his skull and allow it to grow was presented to us as his only option of survival, and was done in late May of 1996

Collin and Rob. May of 2003.

We watched and waited the months after that surgery for signs of progress in Collin's development. It was maddeningly slow. So much so that in May of 1997, we went against our family doctors recommendation and took Collin to The Portland Orthopedic Clinic for a second opinion. We were stunned to be told Collin had Cerebral Palsy, specifically Athetoid or Dyskinetic cerebral palsy.

It was no more than a month later that we got what would turn out to be the last of a long line of diagnosis for Bonnie. After a roller-coaster ride of medical conditions that ran from lymph cancer to an allergic reaction to roses, the good doctors of OHSU finally were able to put a name to her condition.
Primary Sclerosing Cholangitis. She went on the liver transplant list soon after.

During the following two years, for what ever the reason, Bonnie and I became more and more at odds with each other. So, in August of 1999, we agreed that our marriage was over, and we would begin the process of an amicable separation. Unfortunately, cooler heads did not prevail, and the divorce turned ugly on both sides. When the dust cleared, Bonnie was given custody of Collin, and for the next few years, Collin more or less vanished from my life.

Collin, August 2003.

On December 20th of 2002, after a long illness, Bonnie passed away. Because of the bad feelings between our families, I only learned about her death via the local newspaper.

Without going into a lot of detail and dealing with issues that at this time are better left alone, I will say that in May of 2003 I was informed by the State of Washington that Collin would be moved it to live with Diane and I. We learned this at 4:00 in the afternoon. Collin got here at six.

Diane and I were ill equipped to deal any seven year old child, let alone one with the demands that Collin's conditions dictated. We had no bed or bedding, no clothes for him, and our house is barely big enough for us, let alone an active child.

But deal we did! And we must have been doing something right, because Collin seemed to flourish with us. He picked up several pounds in just a few months (He only weighed 39 lbs. when he got here!) and his over all health seemed to improve.

Collin, January 2004.

All of his growth came at a cost to us. Collin's condition requires that he has 24/7 care. And let me tell you, when you are watching Collin, that's all you can do! No phone. No computer e-mail. Nothing.

Our lives became a ridiculous patchwork of care givers, case workers, and day nurses. Every minute of every day needed to be planned out a month in advance so that Collins needs were met, and Diane and I could still take care of the wedding ministry, which was getting to be as busy as ever.

Between May of 2003 and August of 2004, the time of Collins stay here, we went through more care givers than we can remember. Very few could deal with Collin's needs.

It should be noted that Collin was, in the fall of 2003, finally and formally diagnosed with Autism. We were sure of his condition, but we could never get the state to agree with us.

Collin, March of 2005

So there you go. Collin lives with caregivers who do their best to give Collin everything he needs. It should be noted that after only nine month, Collins caregivers are already getting burned out, and are making noises that they may not be ably to care for Collin much longer.

We will keep you posted.

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