Day 4 Post-Op

Hi to everyone. Thanks for all the continued prayers. Please don't quit. Avery has rested better today and late yesterday...finally. She has received a couple additional doses of anti-seizure meds which seem to have helped somewhat. She is still having some activity, but it has decreased some and each event has gotten shorter than they were a couple nights ago. We all actually got some sleep last night since she was. She looks much better today...hardly any swelling left and she can open both eyes. She has opened her eyes several times today and just "looked" around. Previously, we had only seen the right eye open with seizure activity. She occasionally has some pain, but overall it appears to be lessening. She just simply looks more like our Avery, just with less hair. When Jon went in early this morning, they had washed the remaining hair and put a barrett in it. Of course, the EEG tech came along and messed that all up! Anyway, she is getting better every day. Now, we just need the seizures to disappear! We have not yet gotten the results from yesterday's EEG, but we should hear this evening when the neurology staff makes rounds. They did another one today to see what was going on after all the medication increases (a comparison to see how effective those changes have been). Hopefully, we will know those results this evening too. When Dr. Jallo made his very early rounds yesterday, and Dr. Kossoff his, Jon talked to them both (I was sleeping as I had been up with her all night). They are both really surprised by the seizures. The CAT scan looks really, really good according to both of them. So, it is a wait and see game. If the seizures don't go away, they will likely play with meds again for the next six months...and then consider going back in if all points to that as still a possibility. As hard as it is to think about right now, we certainly want there still to be possibilities if this surgery has not done as we expected. We are still holding out for the best though...praying hard to God for a miracle. Please join us in that prayer if you haven't already! Caiden is having a good time. The video games here at the Children's House are quite a hit...especially since we don't have them at home. He made Avery a sign today for her crib that has her name on it and says "I Love You" and "From Caiden". He will be taking it over to her this evening. All the nurses think he is a doll...a "little man" as they've called him. The weather has been pretty great, sunshine and just a bit cool. The sunshine sure helps to keep the spirits up when you are tired and worried. We finally got to the grocry last night to pick up some food...the cafeteria was getting old. While Johns Hopkins provides world class care, their cafeteria's are far from providing world class food! You can only eat Subway so many times. Well, I will post more as I know more. Love to you all! God bless! Holly