Tuesday, July 26, 2011

Well true to Harper style, the girl actually cut two bottom molars at the same time!  They are now through and her mood is returning to normal.  It was so bad that I actually wrote in her food/seizure/meds tracking diary "Bad Mood Day" before I knew what was going on.  I'm betting sometime in the next two weeks the matching top two molars will be coming in, as that is how it was with her other 8 teeth and I can see the red bulges up there too.  

Her seizures are all over the place!  I don't know if it is the addition of the new medication Lamictal or the teething or both.  But they are getting worse, more frequent, and more severe.  She is now having about 4 to 5 per day and they are lasting 5 to 10 minutes long with tears and screams.  It's terrible!  So heartbreaking!  I don't want to stop the medication too soon without giving it a chance to work but I don't want make her suffer any more than she has too if the medication is what is causing the problem.  Tough Choices!  I will hopefully see the Neurologist in the next week or two and figure something out.  

Her therapies are going well!  They keep our days pretty busy as they are all Monday through Friday except when we travel to Austin for her weekend sessions.  I have to take a business trip in October for 5 days....I sure hope my Aunt Jonnie and Mom can keep her schedule straight! ;)  I know Lily will keep them in line!

REMINDER:
IPAD2 Raffle tickets are on sale now!  You do not have to be present to win.  The drawing will be held at our August 5th Auction Event.  We have lots of really cool items such as: Wii Sports, IPOD Touch, Taylor Swift Concert Package, Drive Your Dream Farrari for an hour, Gift Cards and much more....See You in 11 DAYS!!!
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!