It has been over three weeks since we last gave an update. Little Henryk continues to get more sick, when we thought more sick was not possible. We now look back at pictures where we initially thought he looked so sick and think he looked pretty good compared to now. His sweet little body is mostly protruding bones.  His temperature is 95 degrees, pulse is 80, and he breathes 12 times a minute.

Although his form continues to distort he is so clearly and wonderfully the same boy. We continue to adore his content temperament and cute cry as he registers his complaints. We gaze on each of his parts and attribute them to one of us…he has Michael’s long fingers, Emily’s ears, Michael’s nose and mouth, Emily’s eyelashes, Michael’s eye color, Emily’s eye shape. And the whole package of those parts still looks so like his sister.

There are still many questions. We continue to be in a state of confusion about most aspects of his life. Now is no different. There have been scores of times when we have thought he breathed his last breath. Even our hospice nurse has told us that she on multiple accounts left our house thinking there would be no need to come back. It is strange to wait for death to come when it is an unwanted visitor. It really is the only relief to be offered to Henryk though, and although it is a wretched relief for us, there will be no wretchedness in it for him.

We have had a lovely holiday season. We had special time with close friends and both sets of our parents came to us to celebrate Christmas. They have made all of our holidays this year possible. We had a delightful New Year just the four of us.

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Lily getting ready to go outside and help Dad shovel

Lily getting ready to go outside and help Dad shovel

Mom and Dad helping Lily on the cash register

Mom and Dad helping Lily on the cash register

Bette (aka "Grammy", Michael's Mom) and Emily

Bette (aka “Grammy”, Michael’s Mom) and Emily

Lindsey and Lily

Lindsey and Lily

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Lily and B (Emily's Dad)

Lily and B (Emily’s Dad)

Megan and David Mathis holding Henryk with his Christmas gift ornament (Baby's First Christmas)

Megan and David Mathis holding Henryk with his Christmas gift ornament (Baby’s First Christmas)

Lily and Annie working on the Gingerbread House

Lily and Annie working on the Gingerbread House

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Dec 6-25 2012 147

Coleman Mathis really excited about his "Cars" sticker book

Coleman Mathis really excited about his “Cars” sticker book

Carson (left) and David (right) focusing on their own "Cars" sticker book

Carson (left) and David (right) focusing on their own “Cars” sticker book

Henryk - Dec 30, 2012

Henryk – Dec 30, 2012

Dec 28, 2012 - Lily was playing with Henryk and left him one of her Thomas Trains and some stickers

Dec 28, 2012 – Lily was playing with Henryk and left him one of her Thomas Trains and some stickers

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