Wednesday, March 16, 2011

JTWF Special Kid: Elizabeth

Elizabeth was born Feb. 26, 2009, with a rare brain defect known as Dandy Walker Malformation. Because of this malformation, Elizabeth had to undergo brain surgery when she was only a day old to insert a shunt to control the hydrocephalus that had accumulated. She has since had four shunt revisions. When Elizabeth was six months old she went into respiratory failure following an upper GI to figure out why she was having respiratory problems. It was determined that she had been aspirating silently from birth, causing severe damage to her lungs. She was on a ventilator for more than three weeks and remained in the hospital for eight weeks. We decided to have a g-tube/nissen surgery to prevent further damage. (She takes nothing by mouth.) At this time it was discovered that Elizabeth also suffers from congenital hepatic fibrosis, a rare liver condition. Children with congenital hepatic fibrosis often need liver transplants at some point so we are closely monitoring that along with her kidneys. Elizabeth also developed double pneumonia when she was one and was in the hospital for six weeks. Unfortunately, she spent her first birthday on a ventilator. Elizabeth is currently on medication to control seizures and is on oxygen at night to help with mild sleep apnea. She is severely globally delayed. It has now been determined that Elizabeth has a genetic syndrome that is the cause of her medical issues and delays. She has had a rough road but she continues to smile and laugh each day, melting the hearts of all who know her.
I have attached a picture of Elizabeth. I write a blog keeping people updated on her medical status, Also, I made a video highlighting her journey:

~~As Submitted by her Mother, Susan

1 comment:

Kristina--Picky Tots said...

What a wonderful blog you have!