Reality

We have put so much effort into promoting Harper's fundraising events that we have failed to keep you posted on Harper!  Although we choose each day to maintain a positive attitude about her progress and her condition the reality is that lately in the area of seizure control she is not doing well.  Mind you she is showing great progress in her therapies and as I have posted in videos an amazing ability to understand some basic commands.  We are so blessed for the small improvements and are confident they will lead to larger ones!

Harper is currently on depakote, a drug that has helped to lessen the severity and frequency of her seizures but has not stopped them.  In May we attempted to add the Ketogenic Diet to the mix to see if we could gain better seizure control.  It helped some but we never were able to find the right combination to actually control the remaining seizures.  We are still on the diet because it is helping with her weight gain and did help some with seizures.

Harper recently had her 15 month check up and looks great in length at 30 inches and head size of 46 cm but her weight is 18 pounds.  Keep in mind she has extremely low muscle tone compared to that of a normally developing 15 month old.  She is only now just starting to bare some weight briefly on her legs in therapy.

We added Lamictal to the medication mix on June 29th and have been slowly increasing the drug amount to avoid experiencing any side effects.  The drug has made Harper more alert and therefore able to excel more in her therapy sessions.  However, as we increase this drug her seizures are become more severe lasting 5 to 7 minutes and more frequent at 3 to 4 times per day.  She is showing greater signs of distress with each seizure that occurs.  This is not the direction we were hoping the addition of this drug would take us.  Therefore, we will be discussing with her Neurologist next week our next set of options which we are very quickly running out of!

Thank you to EVERYONE for all the help, love, support and prayers you have provided to our family, Harper and her Cause!  Your efforts have really brought everything together for each and every event we have had to help fundraise and spread awareness of Harper's condition.  We are really excited about our upcoming Fundraiser Auction!  The Love and Support of our community, friends and family has really brought some awesome items to the auction.  I know God will provide the people in attendance and this event will be a great opportunity for us to increase awareness of CDKL5 disorder and huge blessing to Harper and her Cause!