Sadness and then a wake up seizure

I went to bed last night in anguish thinking of poor sweet Clover and her family. The Dohman family received really heartbreaking news yesterday. Clover's EEG showed no brain activity and her brain has swollen to the point that surgery isn't an option. Patty posted last night - "Tomorrow we will surround Clover with love from her big brother and entire family." Clover's situation hits us close to home. Clover is also from Minnesota and goes to the same hospital as Luella. Clover's parents were at the Dravet conference we went to last summer. Clover had been doing so well up until December. She had gone over a year without having a seizure! In November Clover and her family were able to take a Make-A-Wish trip to Disney World and no doubt captured many memories that will remain with them a lifetime! Please pray for the Dohman family.  http://www.caringbridge.org/visit/cloverdohman

It is just a very real and scary reminder that things can change in an instant with these precious children! We are fighting a battle for Luella everyday and praying that God will protect her!

So, going to bed, feeling sad and then getting up this morning only to hear Luella's monitor alarming less than five minutes later... and finding her oxygen dropped into the 50s... that's how my day started. Thankfully the seizure basically stopped by the time I lifted her out of the crib and got her to the floor. She did need a bit of oxygen. Then I just held her. I wish I could just hold her all day. And never let go...