Thursday, September 8, 2011

I lift up my hands...

I am so tired!  I know it's not about me and I know I can't give up, there are two little girls who depend so much on both Dustin and I but something has to give.  This schedule is crazy and I see no end in sight....these seizures have to STOP!!

We had a productive weekend although not supper fun because we all had a little boogie nose.  Harper got it the worst.  I took her to the Doctor on Tuesday and she is sick.  Poor baby is struggling and we are doing the best we can to make her comfortable.  For those who have children, if you can go back to the days of colic, if you suffered through that then you'll understand.  That is where we are now only she is 16 months. It's been 5 days.  We don't know if it is the diet change, being sick, a phase of her disorder, or all the above.  
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1 comment:

  1. AnonymousSeptember 8, 2011 at 9:51 AM

    I'm sorry dude. Is she not having seizures since she is sick? At least with medicine she'll be over her boogies in a few days. You guys need a vacation!
    Deanne

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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!