Please wait before you start flogging...

I apologize profusely for leaving you all without an update for so long. It has been a long 3 weeks, especially with the holidays and all. I will make every effort not to go that long again without posting at least a little snippet. Avery continues to do about the same...still arching, stiffening, and screaming/crying a lot of the time. She has a better day here and there and then a couple really not good days as well. We just don't know. She still hasn't had anything we know of as seizure, but these episodes are not great for her little body either. We have been to doctor appts. and had some testing done. Nothing has come back wrong with any of them, which is good, yet we still don't have an answer as to why these episode are occurring. She is being maximally treated for reflux (not sure that it is something she truly has), has been tested for the c. difficile bacteria, has had an abdominal scan of all the organs in there, changed "feeds" several times, etc. Nothing seems to offer any improvement for any length of time. We are in Baltimore right now as I write this. We are here for Avery's follow-up appts. with Dr. Jallo (the neurosurgeon) and Dr. Kossoff (the neurologist). We are hoping that they can give us some insight now that this is continuing to go on with her. We just want to know if it could be neurological or not and why or why not. The sleep deprived state that we are operating in is taking its toll on us. We do our best to get through each day. God knows we love her so. It is so incredibly hard to see her in such distress and be helpless to make much, if any, difference. Sometimes, we just have to let her sit or lay there and have these episodes because we are beyond exhaustion. I can not describe how inadequate a mother that makes me feel like at times. I have to work very hard at not getting so down in spirit some days. I just want more for her than this. And I want her to know and feel that she is loved so much. We have tried to restart therapy, but it has also been difficult. She gets so upset if you try to put her in the positions needed to do her stretches and stuff. So, we are not able to see any huge gains in development yet. We are still hopeful that eventually they will come if she improves. Surely she will!? I keep thinking that this can not be God's plan, but who am I to assume that. I know not what lies ahead for her...I have hopes and dreams, but no crystal ball. I just know I will be devastated if it is not more that what she has right now. It's not that there has been nothing gained, but we sure are hoping for lots more. She uses her left handsand fingers more that she did previous to surgery, and she has a bit more head control (not enough to hold it up completely by herself, but just a touch of control sometimes now). Caiden is staying with my cousins Brad and Tara and their son Brady while we are here in Baltimore. He was looking so forward to that...he just loves Brad (because Brad is like a big kid and he really engages Caiden, playing and joking around plays with him). We are fortunate (and so very thankful) to have such great hands to leave him in and to not have any reasons to worry about it. I only hope that he doesn't want to trade Jon and I in by the time we return! He might decide that life is better there. We miss him already. When I talked to him tonight, he was doing just dandy....he had already beaten Tara and Brad at UNO so he was pretty pumped about that. We are busily preparing for Christmas. Mom and Dad Paauwe will be spending it with us at our home. We are looking forward to that. Now, if only our fully decorated tree hadn't fallen over, I wouldn't be stressing about having to get it redecorated when we get back home. I just have to laugh when I think about hearing it fall as I was trying to tend to an unhappy Avery at 5 AM in our bedroom upstairs. One peek down the stairs and my suspicions were confirmed. The tree was down! I think Jon and I both laughed so that we didn't cry...I know I was perilously close a few times that morning. We are also looking forward to the Children's Service at our church on Christmas Eve as Caiden and all the kids will be leading it. That will be a celebration for sure! Oh, I almost forgot to mention that Caiden will (finally!, shame on us) be baptized on Jan. 7th. We are so excited for that! Well, I need to be in bed since Avery IS sleeping at the moment. Love to you all...please keep the prayers going. We need answers and we need these episodes to go away so that we might see how Avery could develop. Holly