Sedey Family: My boys

All about Owen

On March 31, 2010, Owen and his twin brother Caleb were born. Owen was 5lbs even and presented with many physical abnormalities. We later were told that Owen has Multiple Pterygium Syndrome or Escobar. In fact, at the moment, they are telling us that he has the lethal version, although he does not present with any of the "lethal symptoms" and its not expected he will. We will update more on that later. Escobar is a type of Arthrogryposis. Arthrogryposis is basically joint contractures. The joints can be contracted in flexion or extension and can affect the upper, lower or both sets of extremities. Currently, Owen has joint contractures (flexion) in almost all his joints. His toes seem to be the only unaffected joint, with the exception of one toe. He has one clubbed foot and one vertical tallus. He has bilateral hip dislocations. He has scoliosis. He has a smaller jaw. He had an inguinal hernia that has been corrected (May 2010). He has had five achilles tenotomies. Owen has webbing or extra connective tissue at all of his joints. Owen has artery damage to his face in the lip, nose and eyebrow area. Owen has a high palate. Owen has chest wall deformities that left no space for his lungs. In terms of surgeries Owen's has has:

-Inguinal hernia repair/right orchiopexy (May 2010)

-Left Orchiopexy/G-tube placement (December 2010)

-Spinal Cord Release (January 2011)

-Left VEPTR placement (June 2011)

-Right VEPTR placement and left expansion (October 2011)

-staff infection post placement- resulting in placement of a vac, PICC line, and two surgeries for hardware removal (Oct-Nov 2011)

-Bilateral VEPTR expansion (February 2012)

-Right knee release and clubfoot correction (April 2012)

-Left knee release and vertical tallus correction (May 2012)

-Bilateral VEPTR expansion (August 2012)
-staff infection post placement- resulting in wound vac and heavy duty meds for 8 weeks (September 2012)
-Bilateral VEPTR expansion (February 2013)
-NEXT SCHEDULED SURGERY: Rod replacement (August 2013)

I will update as we continue with his treatments and learn more about Owen.

Sedey Family

Monday, May 17, 2010

My boys

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