Eve has been doing pretty well since our ER visit.  Tonight, however, she had a very bad pain episode.  The worst we've ever seen.  She was crying out so loudly; moaning and keening in pain.  Her ankles were crossed and her knees pulled up tight and elbows bent.  When I gently uncrossed her ankles, she cried out like I broke her leg and her body shook.  I vented her, gave her morphine, and rubbed her legs.  I asked her if she wanted me to hold her and she emphatically said "ah" (yes).  I cradled her in my lap and she slowly relaxed.

It's times like these when we realized how much she needs us.  In that moment of her yelling in pain, I wouldn't have been surprised if we needed to take her to the hospital.  Thank God we have the morphine to give her.  Thank God she seemed to relax.  My heart aches to see her in such pain.  Our goal in managing Eve's disease is to keep her comfortable.  This is getting harder and harder.  If you pray for my baby, please pray for her comfort.