Monday, March 28, 2011

Progress

Well we made it back from California!  So glad to be home!!  Harper is showing great progress.  Her hip joints are looser and her movement is more fluid.  She is more comfortable on her stomach and is lifting her head more often.  She is attempting to pull her feet underneath her more and roll from her tummy back to her side as well.  We will continue our treatments on the weekends in Austin with a therapist there until May.  

We have an appointment with an Endocrinologist on Wednesday for some issues caused by her medication.  Hopefully nothing serious. 

We are still working on trying to control her seizures.  Our current medication combo is not working very well but we were told it would take a month to really know.  We have about two more weeks.  We are members of an online support group for families with children with CDKL5.  Mind you every ones mutation of that gene is different so there is no real set standard for severity or treatment options.  Although discouraged at times we remain hopeful for Harper's future as there are a couple of families who's children are seizure free and have been for 2 to 3 years now. 
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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!