Nathan S. - Quilt Finished in 2008

Born: March 31, 2004

Illness: Encephalomalacia, Seizure Disorder (Lennox-Gastaut)

Nathan's Story

Written by Nathan's mom in January 2008

Nathan Edward was born at 3:36 PM on Wednesday, March 31st 2004. The pregnancy was completely uneventful, with the exception of a positive Quad Screen. At 42 weeks, labor was induced and Nathan was born after 6 hours of labor and a half an hour of pushing. He was absolutely beautiful and appeared perfectly healthy. Nathan spent his first week of life in the NICU-since his white blood cells were elevated and it appeared he had an infection.

   He was very irritable at home and did not like to lay on his back. He would cry constantly if he wasn't held and walked. At about 7 weeks of age he started breath-holding until he turned blue and lost consciousness. After a CT-Scan and MRI it was determined that Nathan suffered severe damage to his brain most likely before his birth. He has seizures as a result of this damage which mainly consists of myoclonic jerking and anoxic breath-holding seizures.

At the age of 2, he was diagnosed with Lennox-Gastaut Syndrome. In the Summer of 2006, Nathan had a Vagal Nerve Stimulator (VNS) implanted to try and decrease the frequency of seizures but so far this has not helped.  He continues to have many, many seizures each day.  He's been tested for many causes (genetic and environmental) but so far we have no answers as to why he suffered this damage. He is severely delayed and functions on a one to two month old level. He has been tube fed since the age of 14 months and suffers from severe esophogeal reflux (successfully treated with a fundoplication surgery in January of 2006).  After this surgery, Nathan became a new child.  He no longer had to be held constantly and was actually a content little boy.  He went from being 18 lbs at age 2 (Failure to Thrive) to 43 lbs by age 3. 

He also has Cortical Visual Impairment, meaning his eyes function but his brain does not process what he sees. Nathan also suffers from sleep apnea.  In March of 2007, Nathan had his tonsils and adenoids removed to improve his breathing while he sleeps.  Nathan gets home based Physical and Occupational Therapies once a week. He has recently started attending the county's Special Needs Preschool and goes three days a week.  He loves to be outside (if it's not too hot), listen to music (The Beatles, Paul McCartney, and DADDY!), and can give the best smile when you call him "NatieBug" or "DUDE." He is a big brother to Gillian and Erin. He is our BUGGER and we love him dearly!