This page is the springboard for a non profit serving other families living with disabilities. Other days it feels like it's all going too fast! This page is an effort to keep track of it all and to find encouragement on the hard days. We've been so blessed through the years, we want to give back. We have started a non-profit to serve families with special needs. High Fives for Stacey Inc. was for
med May in of 2014. :)
We are starting a new program with her. It's a Neurodevelopment program and is hours and hours a day of exercises we do with her. We get tired and frustrated and we get excited and motivated. Join us where we're at! :)
So the nut shell: In July of 1999 at 3 months old, Stacey was diagnosed with Agenesis of the Corpus Collosum, a deletion on Chromosome 3q (12-21) , Chronic Lung disease, She was on oxygen for a year, Mitochondrial dysfunction, Hypotonic Cerebral Palsy, Global Delays, Delayed gastric emptying, Sleep apnea caused by slow brain waves during sleep as well as obstructive from low muscle tone, and chronic cuteness. :)
Exactly 4 years later she had her first seizure. It lasted for several hours and resulted in an 8 day stay at Children's hospital in LA. She was in an induced coma for 4 of those days. She has since been diagnosed with Status Epilepticus - meaning her seizures can be very hard to stop and usually last for hours. She also has sub-clinical seizures meaning we don't see them. All we see is when they get strong enough to make her sleep and throw up. She had pneumonia 18 times in 2 years. It was to the point where the pulmonologist was preparing us that each time was riskier and it would likely take her life. It's been a long road of ups and downs, tears of joy and tears of sorry. It's been a new kind of normal for us and we thank God for being the Great Physician that has all of our days numbered, regardless of what the medical profession says! :) Dr's can diagnose, but only God can prognose. :)
