One week later...

After a bit of a rough evening again last night, I think we finally have the pain under much better control. We actually tried morophine last night and it seemed to help quite a bit once it took effect, so she was switched over completely to that today...and she had a much better day. She is still not pain free or seizure free, but things seem greatly improved. We got a validation on the morophine from the parent of another child who underwent surgery for HME and was experiencing this pain causing back arching and crying out. She helped us a lot in undertanding what is likely happening to Avery and how they treated her son. She was able to sleep a lot today, which I'm pretty certain is needed for her to heal better and faster. Mom is now with her overnight. Thank goodness that my mom had worked the night shift so much and can tolerate being up all night. It has been a big help because we just don't want to be away from Avery for very long. Jon and I both help her for a long time today. That was really nice...for all of us. Now, if the PICU just had some reasonable chairs for this...we would hold her all day. Hopefully, we will be in a step-down room soon and have more room and better chairs for that purpose. We are apparently just waiting for a bed to upon up there. It sure is a busy place. It is heart-breaking to see so mnay sick and hurt kids and the families that love them. They are are little angels. Please continue to pray that as the pain lessens the seizures will also and that they will eventually disappear completely. We know that God is listening everyday and that He loves us and all of you. We can't wait to see all of you again and share the beautiful "new" Avery God gives us. We got news today that some greats friends of ours from church/Indianapolis are coming to visit us on Sunday and Monday. We are so excited to get to see them. We are keeping it a secret from Caiden because he will be so excited to have playmates for a couple days! Caiden is continuing to do great. He really does a good job at taking all this in stride. We are so blessed that he is such a good and easy kid. He makes us laugh every day and we certainly experience much love through him. I know that he will grow to be Avery's biggest champion and defender. As always, we thank all of you for you great supporting and encouraging emails and for your daily thoughts and prayers in our name. You give us strength every day! Thank you. More pics coming soon...hopefully tomorrow night. Much love and many blessings, Holly