The Rowes In The Rose City 2: Avery & Kate At The Park

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Jordan's Journey

Our daughter Jordan was born in December 2005 with brain malformations. Despite 3 years of searching for a why (genetics, diseases, syndromes, etc) the medical world can only tell us that these things happen. She has been all over the United States, and samples have been sent to Canada & France as well, and now we're at the bottom of the barrel in terms of testing. Perhaps in the future medical research will discover a disease or give a name to Jordan's condition, but for now we live with the fact that her brain did not form properly in utero.

Jordan's brain malformations include cerebral atrophy, a small corpus callosum, marked decrease in white mater volume, decrease in white matter myelin, significant volume loss in the brain stem and cerebellum with hypogenesis of the inferior cerebellum, and frontotemporal subdural fluid collection present, without associated mass effect. Because of these abormalities, Jordan has a number of medical conditions including severe developmental delay (she's basically a newborn in the body of a 3-year-old), Lennox-Gastaut Seizure disorder, profound dysphagia (she's 100% gastrostomy-tube fed), cortical vision impairment, severe hypotonia, reactive airways disease, lumbar scoliosis, and hip dysplasia.

Despite all of this, Jordan is our darling. She's got long, dark eyelashes, and beautiful long, blonde curls. And she's the best snuggler in the house. She recently started pre-school, and with the help of her nurses and therapists, she is making progress, particularly with her vision. Life is not always easy with Jordan, but we wouldn't want it any other way.

Jordan's condition seems to have been a strike of lightening. Avery, born in December 2003, and Birkeley, born in December 2008 are both happy & healthy, with no neurological impairments. Of course we love all 3 of them and think they are the best kids in the world.

UPDATE on 23 March 2009:

Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 04:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.

The Rowes In The Rose City 2

In Loving Memory of Jordan Emily Rowe

Jordan Emily Rowe (at age 2)

"Jordan's Journey"

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11 March 2011

Avery & Kate At The Park

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Jordan's Journey

The Rowes In The Rose City 2

In Loving Memory of Jordan Emily Rowe

Jordan Emily Rowe (at age 2)

"Jordan's Journey"

Our Old Blog (Jul 06 - Feb 09)

The Rowe Family

The Rowe Kids

MapLoco

About Me

Hits (approximately)

My Favorites

Blog Archive

Subscribe To

Followers

11 March 2011

Avery & Kate At The Park

0 comments:

Post a Comment

Jordan's Journey