How it all began...

When Jessica was born 8 weeks early, nobody knew the difficult road that lie ahead. She was a beautiful baby with brown hair and brown eyes weighing just 3 pounds 10 ounces. Jessie stayed in the NICU for 4 weeks and seemed to be doing fine, so she came home. Over the next months, Jessie did not progress as she should have. By 6 months old, we started seeking early intervention support for Jessie because she was not able to sit up, roll, or crawl.

At 7 months old, Jessie was hospitalized after having her first seizure. Through lots of testing, we found out that Jessie had suffered a type of brain damage called PVL (Periventricular Leukomalacia) due to loss of oxygen and blood flow to her brain either during pregnancy or at the time of her birth. The doctors told us that there was a high probability that she would be mentally and physically delayed, and may never walk or talk. Her seizures were treated with 8 weeks of corticosteroid injections followed by 2 years on the ketogenic diet. We chose the diet in place of daily medications to maximize her alertness, ability to learn, and possibly prevent future seizures.

By 12 months old, it was clear that Jessie had significant motor delays and she was diagnosed with spastic quadriplegia cerebral palsy (CP). CP is a disorder that affects muscle tone and the ability to coordinate body movements. It often leads to other health issues including vision, hearing, speech, and learning. CP is usually caused by a brain injury that occurs around the time of a child's birth when blood and oxygen flow to the brain are lost and brain cells then die. It is most predominant in children born prematurely and affects roughly 1 in 500,000 children. There is no cure for CP, but therapy, equipment, and sometimes surgery can help a child’s functioning level.

Jessie has struggled to learn to talk, walk, use her hands, and become potty trained. While she has made a lot of progress over the past 3 years through special education, physical, occupational, aquatic, and speech therapies, she still has a long way to go. We are hopeful that she will one day exceed our expectations and lead a full life.

Jessie participated in an intensive conductive education therapy camp in the summer of 2009. This experience was life-changing for Jessie! She became more socially aware, began using the potty, and took her first steps with a walker at camp. Conductive education is a method that originated in Hungary and involves an intense multi-disciplinary approach to teaching children with motor disabilities. It combines academics with physical activities through repeated daily tasks and movements. It is based on the idea that the brain has the potential to re-wire itself with appropriate stimulation and repetition. Conductive education is done in a classroom setting with other children at similar functional levels.

The camp we will be attending this summer is at the Conductive Education Center of Orlando (http://www.cecfl.org/) and runs for four weeks, five hours per day. We are hoping that Jessie will learn to stand and take steps independently with her walker (she currently is able to take steps with assistance) and progress with potty training this summer. We also hope that Jessie will make strides in her cognitive functioning and communication abilities. We will keep you updated of her progress through this blog and please feel free to comment on the blog and let us know your thoughts and ideas.