Tuesday, April 22, 2003

More about Jenelle

Re-written on August 8, 2006:

Welcome. My name is Kelly, and I am the author of this blog. I am married to a wonderful husband and father named Brett and we have two children named Jack and Jenelle. This blog was created as a way to update family and friends about our youngest Jenelle, who has special needs. That sentence seems so simple and yet there is no easy or simple way to describe Jenelle. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive. Developmentally she is at the level of a 6 month old; she started sitting up in March 2006, she does not use her hands to hold anything and does not talk. She will laugh, giggle and cry when she wants.

Jenelle was born at 37 weeks after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks caused by a kidney infection that I had at the time. I was given Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong with Jenelle. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists would eventually follow. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. And although we use words like Infantile Spasms and LGS, the underlying cause of Jenelle's problems is still unknown.

Jenelle finally gained significant seizure control sometime in late July 2005. After that, her development really began to improve. We aren’t sure what is working exactly but we’ll take it. Welcome again and please feel free to comment from time to time.