I’m sorry that I’ve been absent a few days…. with no New Year pictures to post. The seizure news from the doctor on New Years Eve had me very appreciative of his willingness to spend time on Harper’s case and notify us immediately, but left me very down about the results. Then I caught a small stomach bug that put me out of commission for two days! Thank goodness for Moe Moe! These occurrences, and the news that we did not make our project goal to complete our seizure research; I have not exactly been feeling very upbeat to say the least.
Harper expressing how I feel with the doctor’s news: 40+ seizures in a 24 hour period, sleep EEG is abnormal as well! Research cannot be delayed!
However, today I received an unexpected reminder via mail that…
all is as it should be!
Things may not be the way I had envisioned, because really nothing about this entire situation is something I could have possibly imagined. However, things are as they should be and I will continue to search for and take advantage of the opportunities placed before me and follow the direction that will lead Harper and others who suffer as she does to a better place of understanding about CDKL5 Seizures…a better quality of life!
May your 2013 be more blessed than years past!
As for us, we will continue to fight for our wish of a life that is seizure-free, and a grateful hope that you will continue to support us in our efforts to MAKE HOPE REAL by following Harper and sharing her CDKL5 story!
Harper and Lily placing their penny wishes in the fountain