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Sunday, July 29, 2012

Ellie’s Story
Ellie came into this world, to meet her mom, daddy and big brother Matt, on January 4, 2004.  Of course this was a month ahead of schedule...Ellie has always had a knack for doing things her own way!  As a baby she had two moods, wonderfully happy when she got what she wanted or royally mad whenever she didn’t.  As a crawler and then walker, Ellie was an absolute TORNADO.  She was everywhere and into everything...such personality in a tiny package!  Of course she followed her best friend and big brother around everywhere, and her favorite words were, “That’s MINE!”  Matt usually gave her whatever she wanted.  Little Miss Firecracker could be very persuasive!
In December of 2005, when Ellie was 23 months old, she contracted an illness called HUS.  Hemolytic-uremic syndrome is a disorder that usually occurs when an infection in the digestive system produces toxic substances that destroy red blood cells, causing kidney injury.   Ellie had involvement of every major body system and spent weeks on life support and dialysis, as her kidneys completely shut down.  She also had a major stroke which resulted in brain damage to the basal ganglia, the area of the brain that controls all forms of movement, from the most minute muscle function to walking and talking.  She had multiple surgeries and spent a total of 2 months at Breckenridge Children’s Hospital in Austin.  However, through all that, Ellie’s spunky, firecracker, tornado of a personality served her well and helped save her precious life.  She fought through the worst illness that some of her doctors had ever seen.  With time and lots of prayer, her body began to heal, and her kidneys began to function on their own again.  The next 2 months were spent at Our Children’s House in Dallas, which is a rehabilitation hospital where we were introduced to physical, occupational, and speech therapy and learned about the other challenges Ellie would face.  After going through so much, her journey to recovery began the day we finally brought her home in March 2006.
Medically, Ellie has severe cerebral palsey with dystonia.  This is a movement disorder causing involuntary contractions of her muscles, effecting all of her physical movement.  Ellie needs a wheelchair as she cannot sit or stand unassisted.  She cannot eat by mouth, dress or bathe herself, or communicate effectively verbally.  She also lost vision in her right eye.  On paper she is a healthy, happy mess, but as a person she is perfect.
Ellie meets each new day with a smile.  She lights up when singing, dancing, playing with her brother and many friends, and at school.  Still full of that same tornado-like spirit, Ellie faces her challenges with lots of hard work and determination.  She attends hours of private therapy every week, along with being an exceptional student in school.  Ellie has an excellent sense of humor and is quite smart.  She is fully integrated into a general education classroom (3rd grade this year) at school, and academically her skills are right on grade level.  Last month, Ellie attended her first week-long overnight camp and loved every minute of every day.  She swam, danced in a talent show, sang at campfires, did arts and crafts, met new friends, and even climbed a rock wall!              Almost 7 years later, Ellie’s recovery could be compared to that of a marathon, marked by slow and steady progress toward the finish.  Her doctors have told us that “as long as Ellie continues making progress, she will continue making progress”.  And now, this little ray of sunshine wants to run a marathon, and of course she turned on her unique persuasive Ellie-charm and enlisted two men willing to help her achieve this goal.           So we are going to do everything we can to make this happen for her...our tough, little tornado who has taught us so much about life and love.  Go Ellie!

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