Surgery #2: Post-Op Report Day 9-11

PICTURES FINALLY ADDED: http://paauwecrew.shutterfly.com/action/ There are "new" pics in the Hemispherectomy album, and a new album titled Hemispherectomy #2 that has pics just before and following the second surgery. Take a look if you are so inclined. The "just after" pics from the second surgery are not as hard to look at as the ones after the first surgery. She did not swell hardly at all with the second one. Avery has made some slow improvment over the past 3 days. She has been sleeping a bit better. The Melatonin we started giving her 2 nights ago might be helping that struggle. She is having more content periods throughout the day. She is still doing plenty of the back arching and crying episodes, but we hope they will continue to lessen and eventually disappear as her stomach and intestines get to working better. She has tolerated (without any worsening of symptoms) the change in feeds from Pedialyte, to 50% Pedialyte/%50 Enfamil, to all Enfamil over the past week. Today she is still on all Enfamil but at a higher continuous rate through the G-tube. Over tonight, tomorrow, and Sunday morning/early afternoon, we will be slowly working her up to the minimum total volume of formula plus the required amount of water by increasing the continuous rate and adding some continuos doses of water. If all goes well, they might release us on Sunday. We would then slowly work up to the appropriate number of calories that we want to be at longer term and slowly work at stepping back the continuous feeds into more condensed feeds (or boluses) until we reach our previous feeding schedule. We will start that here at the Children's House and continue as we need to once we are back in Indy. Hopefully, things will go well as she gets further out from the surgery and we take slow, baby steps. Please pray for that as we are. We can't wait to get back home...soon we hope. Avery got to get out of her room for a bit today. Jon and Mom bathed her this morning and dressed her in a little outfit to go stolling through the hospital. Caiden and I met them all then for lunch. She seemed to enjoy it, though the time was not without some of those agonizing episodes. It was just nice to see her doing something "normal". Caiden really enjoyed. He walked holding on to the stoller and saying "It's OK Sissy" when she cried out. Precious it was! I know he misses her and he can't wait to see her develop to be able to interact with him. He wants that so badly! We pray for that for him. Caiden entered a pumpkin he decorated into a Pumpkin Decorating Contest put on by Child Life at the hospital. I really enjoyed helping him with it yesterday...we had fun. We took it over today to drop it off for judging. He received the "MOST HANDSOME" award for his and was awarded 2 "Beanie" animals (one for him and one for Sissy). I took pics...check the album page I provided at the top of this post. I think that is about all I have for now. I'm sure I have forgot something, but I am too tired to figure it out right now. I am off to spend the night with Avery. Here's to hoping I get some sleep! Love, Holly