Saturday, April 9, 2011

Practice, Practice, Practice!

We are currently in Austin where we are getting 5 sessions over the next 2 days with our new ABM practitioner, Chris Elms.  Dustin was able to come with us and was impressed!  Chris even gave him a mini lesson so Dustin could feel what Harper is experiencing. 

Friday April 8th we revisited with Dr Bauchamp, Opthimologist, and Harper will continue to patch her left eye and where glasses.  Harper has Cortical Vision Impairment and is receiving vision therapy once a week from Early Childhood Intervention.  We will revisit in three months.  The doctor in conjunction with ECI is attempting to help Harper develop strong visual pathways in the brain which will aid in her ability to possibly overcome CVI.

April 6th (Happy Birthday Moe Moe) we met with Dr Chudnow, Neurologist, and switched Harper's medication combo.  We are still on Depakote and have added Felbatol.  We will know within the next 4 weeks if this combination will work.  With these drugs we are monitoring for Liver failure and anemia through frequent blood level checks. 

March 30th we saw an Endocrinologist who told us that any child with brain issues is susceptible to early puberty but that Harper would be the earliest case they have seen.  They drew several blood tests and will possibly schedule a MRI depending on the results of those tests.   Hopefully this is all medication related and will soon pass rather than it being full pre-puberty issues. 
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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!