Monday, April 11, 2011

Great Day!

We had a fabulous weekend of treatment with our ABM practitioner in Austin.  You can check out his blog for special needs kids at http://specialneedschildren-chriselms.blogspot.com/  Some of Harper's lessons are featured there this week.  We are very much looking forward to this coming weekend's round of treatment. Her ECI therapist had great comments about Harper's progress during her session today. 

We also received a good report from Harper's Endocrinologist.  It looks like Harper's issues are medication related and not from development of early puberty.  She had an evaluation today at the Baylor Children's House and it was recommended we receive two 45 minute sessions of speech therapy to assist with her eating and sensory issues.  I am very glad to begin implementing this into her therapy program.  I was hoping to be able to receive this treatment from ECI but that is not available to Harper at this time through them because she is not speaking but Baylor is administering this therapy to assist with her feeding issues.  Something ECI does not treat.  That's okay because we are getting PT/OT treatment from ECI with practitioners familiar with the Feldenkrais Method of therapy which is the basis for Harper's ABM treatments.  She is also receiving vision therapy from ECI as well.  After many months of struggle we are heading in the right direction with her therapies.  We are thankful!

Many have asked about her seizures and we are currently at a minimum of 5 per day sometimes more.  Most of them are less severe than they used to be but they are still not controlled.  Unfortunately this battle is not as easy to fight as finding her "intense therapy."  It's a process of elimination on medication options.  This takes time.  We are working to move through the medication as quickly as possible with her Neurologist.  If she doesn't respond positively to the medication we move on but we have to allow her system time to respond before we eliminate the medication option.  Hopefully, we can make the right choice of medication and find one that works fairly soon so that she can have an easier time retaining experiences learned in her therapy.
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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!