Day 13 Still About the Same

Avery was being a good girl again by the time I relieved Daddy last night at half past midnight. We laid her in the crib when Jon left and I laid my head next to her and just talked to her. I even got her to give me some small smiles in response to me saying, "You're Mommy's good girl" over and over while rubbing her head and face. She has always loved it when I would say that to her...so it was a sign that maybe she was recognizing something familiar from before this surgery. She also was working her tongue and mouth around and trying to make vocalizations in response. She was slightly successful in doing so a couple of times. Of course, like some kind of Murphy's Law, the hiccups arrived in time to put a damper on our party. We talked and said that they were mistaking because we didn't send them an invitation to the party, and it was most definitely an invitation only event. Before long, they had her quite mad, which did result fairly quickly in scaring them away (the nurses would probably leave too if they could). She kicked them out of the party! Not too much later, at about 2:30, she drifted off to dream land and rested (very prettily I might add) for a couple of hours. At 4:30, in reponse to having her temperature taken, she woke up hacked off! (We all know that one of the things hospitals are most successful at is bothering you when you are finally good and comfortable...Johns Hopkins is no exception I assure you). So after trying to calm her for about an hour in my sleep-deprived, zombie-like state without much success, I finally gave up and broke hospital rule. I put her in the reclining chair bed with me. She calmed back down and fell back to sleep quickly. Rest assured I did too, which is where the rule breaking began. The rule is that I am not allowed to sleep in her crib (impossible, even if I wanted to, rest assured) and we are not allowed to sleep in the chair together. Of course, the nurses didn't say a word...I am sure that they were happy I was breaking any rule that resulted in Avery not screaming/crying. It was weird to awake though with a doctor standing in front of me...which I did twice. It was that "somebody standing by your bed while you sleep"-creepy thing. Even the doctors didn't say a word about my rebel ways. Not to worry, the chair sleeping did not last long. Avery was quite awake and expressive from about 8:00 -10:00 am. The bath smells of yesterday where long covered up by sweat by the time Daddy relieved me at 10:00. She takes after Jon on that front...definitely a little sweater. That is one body system that seems to work well for her. I'm sure it didn't help that someone had raised the thermometer to 85 degrees! No wonder we were sweating in unison nearly the entire night/morning. And I thought I was a "cold-all-the-time" person...some nurse sure has me beat. Overall, Avery was about the same today. I think she rested on Dad for a good part of the afternoon, until about 4:00 PM. Then she gave him a run for his money somewhat until about 6:45 pm. By that time, she was running out of steam and she had already tossed her cookies (well, in this case mostly water) on his shirt because of a gagging-type seizure and bit his cheek. That's right...somehow Jon had Avery in a position that allowed her to bite his cheek (not on purpose of course). When he told me, I had to laugh. He said it wasn't funny, but I said, "I know its not funny, but it is sort of funny." His response, "It hurts." Who would have believed that this would be the biggest ability she would gain from the surgery! My Mom is now with her on the overnight duty...I told her to not let her close to her cheek. She didn't, but Avey still "got" her. Let's suffice it to say that she didn't throw-up on her, but she did decorate her khakis with something from the other end. Mom in now wearing scrub bottoms. I spoke to her briefly earlier and received that report and that Avery was finally resting peacefully. She needs it. Given today and the neuro team's comments on rounds today, we are still on schedule for surgery on Monday...which just happens to be Jon and I's anniversary. Hopefully that is a great coincidence or a sign of sorts. I didn't realize it until today. We could receive the best anniversary present ever! It's certainly all we want. We got to see our great friends (Jackie, Darby and Finn) from last week today as well. When we met them last Wednesay, I had promised Darby that she would get to see Avery today. So, we headed over to the hospital to see her. Darby was so excited about seeing her and was so sweet with her...touching her, worrying about her, and praying for her. She had made Avery 3 picture boards with stands with her face placed in the scene (like her face was on the princess, etc.) and Finn had brought a bag of beautiful cards that everyone in his class had made for Avery. Talk about sweet kids. They are a testiment to the parents for sure...both of which are very giving individuals. Again, Jackie graciously provided us with a delivered dinner from one of their restaurants. (Thank you so much if you are reading this Jackie...you all were a bright spot in our day again. We look forward to seeing you all once again in a couple weeks. Enjoy your time away!). Caiden continues his quest for Pac-Man excellence. He has learned quickly how to use the controls to manouver through the game. He may have serious Pac-Man withdrawals when we finally get to leave this place. How sad he will be to really realize that this was all a "treat" while away and not a way of life upon returning home. Luckily for us, he watched the movie, The Polar Express, and now thinks it doesn't matter that a toy is expensive because Santa makes everything, as evidenced by the movie, in his toy factory (and it doesn't cost him to do that?). So, my, "Caiden, that costs a lot of money" response to the mention of expensive toys is countered with the response that he will just wait until Christmas and ask Santa for it. And who says it's not fun being Santa? At least he stops when he realizes he might be asking for too much from Santa and moves some items to his "next year" list out of courtesy. Kids are so darn funny, aren't that? He cracks us up every day and reminds us of the blessing that he is. Pure, effortless love...is there anything better? A big thank you to our friends Craig, Kristin, Ethan and Elijah for coming to visit us. We are so thankful for your friendship and generosity. Though your trip had to be brief, please know how much it meant to us that you were here. You all gave us a much needed infusion of strength just through your presence. And thank you for taking Caiden out and about away from the house and the hospital. Thank you for being the type of people we can totally entrust our children to. The connection between us all is so natural and good...God's work again to be sure. We look forward to seeing you all again soon. And to our friends Kristin, Matt, Ally and Bethany: We are so glad that we met you through the Shaw's. We are sorry that you could not make the trip out as planned, but we know that you were where God needed you to be. Thank you for your part in all the goodies that were brought with the Shaw clan. You all have been so wonderful to us. We feel like we have known you all (the Shaw's included) much longer than we have. Your mother is in our prayers every day Kristin. May you and she and the rest of your family find all the strength you need through God, family, and friends. To all our wonderful friends and family working hard on the Benefit Golf Tourney this weekend: We thank you so much for supporting Avery and the rest of us with your time and with your money. We know how precious both can be. We had hoped to be able to surprise everyone at the course by leaving a bit earlier than originally planned and putting in an appearance, but as you all know now, it just won't be possible. We just want everyone to know that your efforts, support and love mean so much to us and we hope to be able to thank each of you in person soon. To all our fantastic family, family friends, friends, friends of friends and "strangers": We love the emails, cards, gifts, well-wishes that you provide to us daily. We thank you deeply for keeping us in your thoughts and prayers! And we thank all of you who are also taking care of our house, our yard, our mail, and working to ease the burdens on our finances. This also includes our church family at Irvington Presbyterian Church, as well as the many other church families of our family and friends who have provided assistance to us. We are greatful that you have chosen us to be somehow worthy of these expressions of the Church's, and thus God's, support and love. And thank you to the 1000 (maybe more?) people wearing the PRAYERS FOR AVERY bracelets in solidarity for our Sweet Pea. Also, to Aunt Megan, who has taken over this bracelet task and ran with other ideas that can be viewed at the http://www.prayersforavery.com/ website. You have really done a great job with this and we are grateful for your actions in this endevour. And thanks to Auny Libby for being the one stop spot for the remaining braclets sales/drops in Tell City and for all those who took on the task of distributing and collecting for them. I wish I could name you all, but I am afraid I don't even know the names of everyone involved. I know I say it all the time, but we know the depths of God's love and generosity because of ALL OF YOU. We feel especially fortunate to have you in our lives and to be sharing our journey with you. Thank you for sustaining and believing in us. We may never be able to repay you, but we sure hope to.