Thursday, July 7, 2011

Progress

Harper is currently having about 2 to 3 seizures per day so we have recently added Lamictal to her treatment plan.  We are still fine tuning the ketogenic diet to aid in seizure control as well.  Despite the continued seizures Harper is making some great progress in her therapies.  Her BIGGEST accomplishment is that she is clearly responding to simple commands such as: Arms Up, Shake, Kick, Splash and KISS!  We are so supper excited!  There is an obvious delay in processing of these commands but she is getting quicker with practice.  She is also getting stronger and more stable with each lesson.   We are headed to Austin tomorrow for her monthly weekend Anat Baniel Intense therapy sessions.  We are hoping to meet Madison and her family during this trip.  Madison unfortunately was born with the same tragic genetic disorder as Harper.  Much love goes out to the Thompson family as they begin the lifelong membership in a rare group of wonderfully chosen parents to love and support such special children. ;)

If you are near the Georgetown, TX area this Saturday please stop by American Legion 201 W FM 487 Rd in Jarrell, TX for the Milestones for Madi event starting at 1pm to Midnight!  There should be something fun for everyone of all ages and best of all it helps support Madi with her battle against CDKL5.  
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)

HARPER ELLE HOWARD - Her Story

Harper Elle Howard was born April 12, 2010 and at just three weeks old, began having seizures. Over the course of 10 months, Harper traveled across the US and underwent a multitude of tests. In February 2011 she was diagnosed with a rare and in some cases life threatening genetic disorder known as CDKL5. There are currently fewer than 300 cases worldwide. Those affected suffer from intense seizures, sensory issues, gastrointestinal difficulties, visual impairment, scoliosis, along with severely delayed developmental growth. For more information on this disorder please visit www.cdkl5.com. The severity of Harper’s particular case is unknown, but we remain hopeful. She has been prescribed intense therapy and seizure control to aid in successful mental and physical development.

Hope4Harper is an organization started to aid in her care. You may choose to help Harper directly with her expenses and although not a tax-deductible, ALL monies generated are used to provide Harper care that might not otherwise be available to her. Option two is a tax deductible option through The Children’s Hospital of Boston. Hope4Harper is working with Dr. Frances Jensen and her team at The Children’s Hospital of Boston on a seizure research project seeking out the best way to stop seizures in CDKL5 affected children. Please view the CHB Project page for more details.

Your support is greatly appreciated and we ask that you keep Harper in your daily prayers, continue to follow her progress and the progress of the seizure research project, as well as, share her story. With your help there WILL be a cure!