THIS BLOG HAS MOVED TO THE TYPEPAD SITE

PLEASE NOTE: This blog has permanently moved to www.thepaauwereport.typepad.com.

Tales from the homefront

Hello friends and family! Please pray for our friend Cameron (see the link to her blog on our blog's main page) who just had a hemispherectomy at Johns Hopkins on Thursday June 14th. She is doing well and continues in recovery. They are good friend and we are pulling for Cameron and praying for strength for all of them.

As you can see, I am back on blogger. Long story, but I hope this will work better this time around. We'll see. In any event, just keep checking in from the blog link on Avery's website, where I will be sure keep the link to the blog site current.

We are very busy here at the Paauwe household. As you can see from these pics, Avery is tolerating her therapy both at home and at Methodist Hospital. The pics of her in the balls are from the sensory therapy session she had last Thursday (we attend this on Thurs. mornings at Methodist's Outpatient Peds. Rehab facility). We enjoy our time there each week. She seems to enjoy the swinging that she gets to do with me (it can leave me feeling pretty loopy though!) there as well. And we love our therapist Carol. She has been so great and helpful to us both. As part of her sensory program, we are doing massage and brushing (of the legs, arm and back) to help with body awareness and sensory processing. She tolerates this well most of the time. We will be adding new fun things soon. The other pic is from Avery's vision therapy that she receives thru First Steps at home. Her therapist Lisa is especially great with her and has helped us SO much as far as vision is concerned. Thanks to her, Avery is making some strides and we finally feel confident that she has vision...YEAH...what a relief that is! In that pic, Lisa is trying to get her to focus on the frog maraca and hold it (tying the tactile with the visual, which is a more progressive skill). Overall, all therapies are going well and we feel so fortunate to have a whole team of therapists that are willing to work together and share responsibilities where needed. They are God's blessings to Avery I am sure. And, I as her mother, am absolutely ecstatic that they all care about her and her development so much. They are fantastic with her and to her (and to us!). Currently, Avery continues to work on head control. She IS making progress each week with that. I am confident that it will happen in the next few months. She tries to pull it up even when she is lying down these days and can hold it sustained in sitting for 20-30 seconds at a time. She can also bring it back forwards without assistance from a dropped back position....that is a big change from before. Overall, she is just getting better and stronger, even with her trunk. And, she loves to lie on her back and kick her legs. She gets going so fast that she will work herself up and then crack up laughing. It is the absolute cutest thing to see! She has also managed to get from her back into a left-side lying position all by herself. She even gets the right arm up and over and out in front of her...which is a big deal given that the right side is her weak side, especially the arm! We are so excited about that. Now she is working on getting all the way to her stomach to her back...which she can almost do (inconsistently though) . She has trouble getting completely turned over the shoulder that she is lying on when doing the roll. We also recently completed another swallow study (the first post-surgery) and was given the good news that she handled both liquid and baby food carrots well, though there were only a few instances of each tried for the study. While Avery may well be able to swallow safely, from liquids up to thick purees, she does have oral aversion/defensiveness. We are working on that now too...trying to work on decreasing that aversion through tastes and bites and other oral motor stimulation. Time will tell, but I am hopeful. We just have to keep playing the cat and mouse game with it. Too much exposure when she is crying or being defensive can make her more averted to things in her mouth, but too little exposure can do the same. So, we very much walk a thin line and it can change daily! But, we are happy to have the clearance to focus on this more and we are starting speech therapy at Methodist to address these feeding issues. Given all this I've mentioned here, we really feel like brighter days are ahead and more goals are attainable for her. She continues to interact, smiling and giggling with us every day.

We do continue to struggle with constipation, though we are trying to work on that. Citrucel is the latest thing we have started. Hopefully it will make a difference. She absolutely hates to have a BM! She will stiffen and scream through it. I used to think she was struggling that hard to move it, but I actually think she is struggling to keep it in! Anyway, this seems to be a pretty common problem with hemi kids. It is amazing to me just how much we keep figuring out that these kids have in common post-hemi...that it those things beyond the obvious.

Caiden finished Kindergarten and is set to move to 1st grade in the Fall. I am excited for him for that. He attends an Indianapolis Public School, but it is one of their magnet schools and it runs a Montessori program. So, next year, he will be in class with 2nd and 3rd graders, as well as other 1st graders. I think this will do him well. He is drawn to kids a bot older than him and is working at a higher level in math. I think having older kids doing more challenging materials will challenge him more and help him to be more confident in what he is doing. He is very bright, but he wants to do things perfectly the very first time and he wants to be right (and yeah, I know who that sounds like!). For now though, we are enjoying our time together this summer. It is nice to have him home with me and Avery again during the day...even if it does make things just a bit more difficult. He is excited about the prospect of getting to get into that ball pit with Sissy on one of our next sensory therapy sessions. He did great being there with us last week. I have to remember to take the time to stop and appreciate the time I get with the both of them together outside of the house.

We just enjoyed a great visit with Jon's parents. They arrived Friday before last in the RV. Mom P. flew back home this past Sat. to return to work. Dad is heading on today in the RV on his way to do some visiting in Michigan. They both came up to visit and to help get the garage roofed and resided. Jon, Dad P., and Mom P. worked hard on that project and we are so thankful for the time we had with them and for their willingness to spend it working to help us in any way possible. Jon, Dad P., I and the kids enjoyed a nice dinner at the Macaroni Grill last night for Father's Day.

We had decided to do the roof ourselves a few months back and save a bit of money from our hail loss on it back in April 2006. Insurance paid to have both the house and garage done. We hired out the house roof and gutters, but opted to do the garage ourselves. That allowed us to be able to re-side it at the same time using the insurance money we were able to save by doing so. It looks SOOOO much better. That old, defective Louisiana Pacific siding was looking worse and worse each day! (And don't even get me started on LP for their getting out of paying any restitution for this faulty product!). Of course the job turned out to be a bit bigger than anticipated (as usual - are there ever construction projects that don't have cost overruns?). Turns out we had some active termites on the garage...even though we pay every year for the company that treated the garage and house back in 1993 to come and inspect and to retreat if needed and thus maintain the 15 year warranty on the original treatment. Turns out, the warranty is pretty much worthless, as it does not hold them liable for any structural damage to the garage or house due to termites. Even after they were just out here for an inspection a couple months back and said that everything was fine. So, $70 a year for a warranty inspection and they have no liability, except to retreat (which would cost about $550 to have done and for which they still have no structural liability following). What a racket, eh? For all I know, they came and injected water into the ground around the garage...without any liability, what would behoove them to do anything else? Honesty maybe...hopefully.

Well, I am sure that I left out plenty, but I will save it for another day.

Happy Belated Father's Day to all father's reading this. Thanks to all of you for your continued support and concern. We appreciate it all so much! And thanks for continuing to tolerate my bouncing from blog site to blog site, back to blog site. Here's hoping this one sticks this time.

Blessings to you and yours,

Holly

Don't forget to check out http://www.paauweclan.smugmug.com/ for recent pics. I have added some from Caiden's class zoo trip and a few of Avery. I have lots more to add soon of our time with Mom and Dad P. and some of just the kids taken in the past few days.

Finally in...now I can tell you were our blog moved

Hi to everyone. I am so very sorry that you have not found anything here for a long while. I have had so much trouble accessing this blog that I finally gave up and created a new one. If you have visited Avery's webpage and clicked the link there recently, then you have been directed to the new site. If not, you probably have just about given up on us. Well, I hope you won't...just come over and visit us at the new blog which is www.thepaauwereport.typepad.com. We are happy with this new blog site so far, so I think we will stay there. It would be safe though to always access the blog through the website, just in case, because I will always update the link there to the current blog site I am using. Hopefully, we won't jump around much, but you never know as things change with these blog sites. Anyway, if you've managed to come here again in hopes of finding a post after all this time, I thank you for continuing to check on us. We look forward to hearing from you at our new site. Cheers and many thanks! Holly www.averypaauwe.com

Video Issues

Hi to all of you. To those coming to the blog to check out the videos of Avery you heard I had posted...I apologize. In trying to reverse their order on the blog page last night, I caused the videos to disappear somehow. Rest assured, I am working hard to get them back up on the blog. They are hosted at vigeo.google.com and I had posted them from the Google site to the blog. Apparently, once I have done that I can not go in and edit and then republish from the blogger site. Lesson learned! Anyway, I have been trying to go back through Google to repost the videos from there, but for some reason the site is not working properly (it is getting hung up during my password and username validation for posting to the blog). I even had Mom try to do it for me from her computer last night, and it did the same thing for her...so I think it is a Google site thing and not my computer at this point. But, alas, you all can still access both videos by clicking on the following links (these will take you to the video.google.site of the videos). For those who have not seen them, we sure hope you enjoy them. And for those coming back, we hope you enjoy them again. http://video.google.com/videoplay?docid=1287664957474185331 http://video.google.com/videoplay?docid=-393039592298392566&hl=en Also, if you are interested, you can check out all sorts of pictures we have put on smugmug.com. Just click on the follwing link: http://paauweclan.smugmug.com. There are albums with Avery's surgery pictures on there, so look at or avoid those as you will. Just remember, that some of those pics may not be appropriate for young children. You be the judge. There are pictures from this Christmas and from our 2004 wedding and honeymoon. Be sure to check out the album of Gunpowder Falls...there are some fantastic pics of Caiden there! If you like, be sure to keep track of the site because I will be adding lots more albums as time allows...so you might want to checl back. Also, if you happen to like the site so much that you think you want to get your own, then please earn a discount for yourself and a referral credit for me by giving them my email address (holly1224@sbcglobal.net) or this promotional coupon Po7VXsvdULzpI. Hope you have checking all these things out. I will post more of an update to catch everyone up on how things have been and what has changed sometime this evening. Avery has therapy this morning and afternoon. Love to all. Holly

Avery laughs again!

This is such an exciting video. I had Avery laughing earlier today (Feb, 19, 2007), but didn't have the video camera with me. I was so excited because this is the first time she had actually laughed since surgery...and in direct response to something I was doing. I shared this with Jon went he got home from work, and of course he had to try to get some of the action for himself. And, it worked! I was back checking email on the computer when he yelled at me to come to the living room quick. When I got there, she was really giggling at him. So, I ran to get the camera to record it so that we could share it with all of you. We are so excited...and I'm sure that many of you will be too! I can't even express how sweet the sound it to me...us! It does so much to raise my spirit and to keep our hopes sustained!

Avery on Valentine's Day...sharing her smile!

I taped this video of Avery on Valentine's Day to share with family and friends. Avery is sitting in her red TumbleForms chair in her "LOVE" onsie that Aunt Megan and Uncle Dave sent her for Valentine's Day. In this video, she shares her smiles and just a little bit of her "voice". We though you would love to see her in this more aware state. She is seems to be making some steps in the right direction these days! Love,Holly

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

I'm gonna need a margarita

Happy (almost) Thanksgiving to all of you! Last week was a busy one and so was the weekend. We are off to a hurried start to this holiday week as well. I think I'm gonna need a margarita after it! Quick summary of the week: Avery had some better periods on Wednesday and Thursday. By Friday afternoon, she was throwing up (from some bug we now suspect) and having diarrhea. So, on Saturday we put her on Pedialyte only for about 24 hours. She tolerated that well and did not throw up anymore past mid-day on Saturday. On Sunday morning, we put her on half Pedialyte and half formula; then at night we had her back on full formula. The diarrhea is slowing down now, which is good. She does have A LOT of gas though so she is really uncomfortable at times. We can literally hear and feel it moving through her stomach and stiff when we are holding her or are just near her. It's hard to believe it can be that extreme on a little girl. She does seem to be calming a bit more in response to Jon and I though, calming pretty easily for a while when we hold her and in a certain position. She also seems to like her car seat a bit better then her positioning chair so we've had that in the house the past few days. Jon went to the Dr. on Friday to see about a fainting spell he had on Thurs. She doesn't think it is a big deal, but has completed a few tests just to check things out. I had a eye recheck on Friday as well. I have a spot on my right eye that the optometrist found at the last visit and he wanted to follow it. The good news is that it does not appear to have changed. He said it seems benign and he said it was like a had a non-pigmented freckle on my retina (back of my eyeball). The term he gave me for it is amelanotic melanoma. I am going to share this with my primary physician just to make sure there is no need for concern. We'll see. We had a visit at the house with friends Doug, Ruth and Thomas on Friday. They brought over dinner (THANK YOU!). We enjoyed the visit very much and the boys enjoyed getting to play together again. Ruth brought a card with donations from the IDEM Land Quality family (my former employer and great set of co-workers). That gift was very generous and so touching. We appreciate it so very much, and I appreciate that so many people care about us and think about us even though I no longer see them daily. Thanks so much to all of them (you)! On Saturday, Caiden and I went to Church to join the 20's and 30's group and the youth group to make put together baggies with food, socks and water to deliver to the homeless here in Indy. I brought Caiden along for the reasons I posted earlier and because he really wanted to go after we talked about it. We had talked about the mission project and what it meant to be homeless. When he realized that some people stay all night in the street in the cold (and in the storms as he asked me), he said "that makes me sad." I told him that it made me sad too and that it made God really sad and we both got choked up for a minute. We talked about how God wants us to do things for other people in need and I explained to him that that is what people have been doing for us since Sissy was born and especially leading up to and since the surgery. So, we ventured out to Horizon House which is a day center for the homeless in Indy (actually, the only day center we were told) and we were fortunate enough to get to tour the place while we were there. I was really impressed...actually I think the entire group was. I will definitely be visiting this place again and volunteering in other capacities when I can. Then we went downtown and handed out the rest of what we had near the Wheeler Mission. Most everyone was really thankful and that made it worthwhile. I think Caiden learned a lot from the experience. I am sure it won't be the last mission or volunteer work we have him involved in. I hope he learns true benevolence while young and goes on to continue giving to others for his entire life. We really gain so much more than we give when we help others. I suppose you all already know that though. Tomorrow the kids have dental appointments and then Avery has an appointment with Opthamology at Riley. We also have to pack so that we can head to Tell City as soon as Jon gets off work on Weds. We can't wait to see everyone. Which reminds me, I know that several have tried to call and touch base with me. I apologize for not being available, but I just don't have much time to talk on the phone right now. I am barely keeping up with Dr. calls and basic house work. I promise that I will touch base with each of you as soon as I can. If I can, I will post a time that we will be at Mom and Ralph's over the Thanksgiving holiday that people would be free to stop by and visit ( no call or appt. necessary...just show up). I don't know what time will work just yet, but I will post when I come up with one. I also plan to do the same in Indy when we get back. I had thought this past weekend, but since Avery was sick it didn't work out. I will post more on that and I time when we return from Tell City. Thanks for continuing to check in on all of us. We hope this brings you up to date a bit. I promise to write more later when I have a bit more time. Hope you have a Happy Thanksginving (I may not get to post again before then) and safe travel to your destinations. That will certainly be in out prayers. Wishing you love and many of life's blessings, Holly

News you can use...maybe

Hello again. Thanks for taking the time to check in on us. Yesterday, Avery had one of her best days (probably THE best day) since the first surgery. She had actually slept fairly decent the night before (I actually got 5 hours of straight sleep). I woke up at one point, about 4 hours into may sleep, and was so shocked at the time I saw when I looked at my watcht that I literaly was checking her to make sure she was breathing...it was that unusual for her, as of late, to sleep that lone without crying out at all. Even after she woke up at about 6:30 AM, she really did not scream and arch all that much during the day yesterday, and no more than maybe once for any length of time. When my friend Kristin Shaw called to see what time I would like her to come over to give me a nap break, I actually got to say that I didn't think I would need one...that I felt pretty rested and that Avery was doing pretty well so far! She and Eli still came over to visit and help me out by watching Avery while I did some things around the house. She was so shocked as well by how well Avery was doing. We even actually felt comfortable taking her with us to the 20s and 30s group meeting at church. She really did great while we were there. It was so nice...and we started to think maybe we had finally turned a corner. But, alas, today was back to not-so-good. I can't explain it. I do not know why she had such a good day yesterday to then turn around and have such a bad day today. We changed nothing today! I guess we will see what tomorrow brings...one day at a time right now (and one hour at a time when a whole day seems to long). We (Avery and I) did have a great visit today with cousins Tara and Kristin and Brady (Tara's son). They brought over lunch (Thanks so much ladies!) and visited with us. It was great to see them and catch up on their lives. Kristin is deep into her semester and looking forward to the end of it and the break it will bring. She is excited about getting to study abroad in Australia next fall. Tara is finishing up her teaching degree class requirements and looking at getting the student teaching completed in the spring. It's obvious that she is going to make a great teacher. And Mr. Brady...what a little doll! He had the biggest, sweet smile for us. Babies sure have a way of just making you fall in love with them in an instant. Such a happy little guy, sitting up all by himslef and "army crawling" across our floor. Can't wait to spend more time with them all at Thanksgiving. Thank you all (Tara, Brad, Brady, Sara, Alex, Brenna, and Kristin) so much for the early Christmas gift too. It was so very thoughtful of you all. Jon was just as overwhelmed by it as I was. Really, I wish I could better express what it means to us. We are constantly amazed at the generosity and thoughtfulness of people. Rest assured, we will do something nice for each other. Caiden has a bit of a cold again. I'm not sure where this one came from...but we all know that schools are a great place to spread a lot of germs and it 'tis the season for all that. He got off the bus today and just looked to exhausted walking down the sidewalk to the house. He wouldn't dare admit it of course, even though her was pretty much swaggering the way a drunk would. He played outside for a while with some of the neighbor kids and then came inside wanting hot chocolate (which we obliged him with). We then got online and found the Webkinz site. Dad and Linda had brought him a Webkinz god when they visited last weekend. There things are pretty cool. They come with a code and you sign up to the site and register them by code and next thing you know, you have a virtual pet of sorts (maybe all he will have considering that he appears to be allergic to dogs as well as cats...much like Jon and I are). Anyway, you have to feed the dog, excercise the day, give it shelter, etc. You get so much money at sign-up and then can earn more doing various things on the website. You then use the money to buy food, items for the house and outside (beds, toys, pools, BBQ, etc...all kinds of things), clothes, etc. You then use the food you purchase to feed the dog, the toys and outside environment to excercise the dog, the clothes to dress the pet, etc. These site keeps track of how well you take care of the dog and shows how the dog is doing overall by these little meters on your pets page showing there percetage of healthiness, happiness, and hungriness. If you fail to feed the dog or take care of it, it can fall ill and have to visit the virtual dog clinic. Pretty cool. He seems to like it and so do we. His dog is a Pug he named Nowey. I guess you can interact with other pets on the site if you have friends who have a Webkinz and you invite each other to your site. I think he said one of the neighbor girls behind us on the other side of the alley has one...so maybe we'll get to see what that is all about. By the time we had dinner, he was so tired he could hardly eat. I took him to lay down early and he is sleeping away now. I am exited about a mission project we are doing this weekend. The 20s and 30s group we belong to at church is working with the youth group this Saturday to prepare for and then distribute sandwiches, socks and water to the homeless in Downtown Indy on Saturday. Jon and I are going to participate and we hope to have Caiden involved also. For Jon and I it is a chance to give back just a small portion of the generosity and caring we have received since Avery was born, especially over the past months. Moreover, it is a chance to do something pleasing to God. We want Caiden to participate too for many reasons. One, we want him to see that there are people out there who have very little and that it should make us sad because it makes God sad. Two, we want him to "see" a group of people giving of themselves to help others in need (as so many have helped us) and the difference it makes to those who are receiving as well as to those doing the giving. We so desperately want him to learn very early on the responsibility of giving back and sharing your resources with those who have less, as well as understand and recognize the common humanity of us all...recognizing that as we are all children of God, God is sad to see any of us suffer or do without the basic necessities and so should we be so sad to see this that we are thus moved to action instead of acceptance. What better way to teach him these things than to involve him right in the throws of it. When you are 5, it is so easy to just take things for granted and to assume that all kids have what you have and that all adults have what your parents have. I hope that it has a profound effect on him. Anyway, we are excited about the project, but saddened that there is such a need for projects of this sort. We may only make a small little dent in the problem this weekend, but starting somehwere is what matters. Doing matters, no matter how small the doing. Action is most certainly always better than inaction in such matters. Well, enough of my musings and ramblings on. Hope all of you are doing well. You all are in our prayers daily. Much love, Holly

Home Sweet Home

We are finally getting settled back in at our house as I am sure you have presumed by now. I apologize for not posting sooner. Our internet connection was not cooperating well at all and today was the first chance I had to work on it. For some reason I could not get to our blog page or Avery's email account attached to the webpage. Anyway, looks like all is working again right now. Where to start... We arrived home on Wednesday afternoon to a great surprise. Our living room carpet had been replaced with new and the hole in our ceiling plaster had been repaired and the whole ceiling painted. We were so surpised and delighted at this! It was all completed and financed by some friends at our church. How thoughful and generous. Thank you all so much! The house had also been cleaned by two of our great friends. Again, such a wonderful thing to come home to. Thanks ladies! It was just so great to finally be home. Caiden started back to school on Thursday. All his classmates were so happy to see him! They were sayong, "Caiden we missed you" and were hugging him. I was so glad to see that...to see that he was made to feel special if even for a moment. It is so great that he has his own place in the world now with school. I think he missed it more than he realized while we were gone. Now, we will have to play catch up for a bit but we don't mind. It's getting so cold out and dark earlier now that we need to find more stuff to do indoors in the evening anyway. Avery continues to do about the same right now. We saw her Developmental Pediatrician on Thursday and brought her up to speed with everything from the surgery and shared our remaining concerns. She is setting up a GI consult for her...hopefully that will occur this week. They will likely do a scope to determine if there is definitly reflux or some sort of stomach irritation. It will be nice to know one way or the other. The bottom line is that if there is then what we are treating her with now is not working for it and we need to do something else; if neither of those seem to be a problem, then we need to stop giving her meds that aren't neccesitated and figure out what is the source of her uncomfortableness. We tried changing her formula again to the Promote that her Diatician had tried to put her on before surgery (she promptly had bigger badder seizures on it so we took her off and put her back on the Similac), but she had been more unhappy the past couple days so we nixed that today and went back to the Soy Similac that we started out in Baltimore a few days before heading home. We'll see if she improves any from that tomorrow. Right now it is just so frustrating to see her so uncomfortable for most of the day and be helpless to do anything that gives her relief. Nothing seems to work with any consistancy and she is not sleeping well. Only about 3-4 hours at night and maybe takes a couple 1-2 hours naps during the day. She is exhausted...and so are we! Something has to give for our poor baby. We are praying for answers and quidance throughout the day. Please pray with us for that too. We got to spend some time with Dad and Linda on Saturday and it was so nice to see them. They drove up to spend a couple hours with us and to see Avery with their own eyes, as so many are eager to do. We enjoyed the visit very much. We returned to church today after being gone for six weeks. It was so very nice to be back! We had missed everyone so much. Avery and Dad had to watch from the TV in the Welcome Center though because Avery was not settled enough to be in the sanctuary with us. Hopefully soon she can go to the infant room while we are in study and worship. We may try next week if Joyce feels up to the task of caring for her through all the screaming and arching. Thanks to all for making us so welcome to be back and thanks for all your words of encouragement and prayers. Thank you Mom for spending 6 weeks with us in Baltimore and putting your life on hold. We really do appriciate it. And thanks to all our friends and family who have worked so hard to provide and take care of us while we were gone. For your kindness and generosity we will be forever grateful. We look forward to seeing many of you over the Thanksgiving weekend. I'm sure that I am forgetting something, but I have to attend to Avery right now as she is quite unhappy at the moment. Until later, thanks for you love and friendship. All my love, Holly

Half way there

Hello to all of you. I am so happy to report that we have left Baltimore for home. We got on the road today at about 1:30pm EDST. We are now camped out at a hotel in Zanesville, Ohio for the night. (Thanks, Carol, for getting us our rooms at your rate! We appreciate it so very much.) We are so glad to be out and on our way back to Indy. Avery has been slowly improving the past couple days. We started venturing out with her on Saturday and she rode in the car for an entire hour without crying a bit...wide eyed and holding Mamaw's finger all the while. She even did pretty well as we went into a couple store and stopped to eat. On Sunday, we ventured out again and she did pretty well in the IKEA store. Mom had never been in one so we had to stop just for prosperity. Overall, it seems that she gets a bit better each day. She did really well today for most of the drive. We stopped at Cabela's on Wheeling, WV because Jon and Mom had never been inside one (Mom orders sock for Ralph from their catalog). Jon and I had driven past it at least 4 times prior to this, so he wanted to stop and look around this time. Avery did pretty well in the store...especially if I was walking around (I had her on me in a front carrier) with her. Now, we are just hoping she will sleep tonight. She seems to fall asleep eventually, but you never know how long she will sleep....sometimes she is awake at 3 am and sometimes 5 am. So, we are not getting a lot of sleep these days. Hopefully that will start to improve and become more consistant in longer length. We saw Dr. Kossoff yesterday afternoon. Of course, Avery decided to sleep during that time. He just talked to us about how things had been going since being released from the hospital and talked to us about next steps with medicines. He is actually going to let us start weaning the Keppra beginning next week. YEAH! HE said since she is on so many anticonvulsants, he feels confortable going ahead and working to get rid of one of them. He mentioned that the Keppra has been known to cause behavioral side effects...so, maybe it could be keeping he a bit aggitated. In any case, we will see. We should be completely off of it by Christams time. We also set our follow up with him and Dr. Jallo for December 12th, so that means we are back to Baltimore for a couple days in 5 weeks. We think we will have to fly out for that trip, but we'll see how the plans all works out. Well, Caiden will soon be in Pac-Man withdrawals. He just loves that game. At least he has been convinced that Santa has to out-source electronic toys and that it costs him lots of money...and game systems are too expensive for Santa to give out. Whew..."good work" to Dad on that front! Now, we have to figure out what other things he may want that Santa CAN afford. We should be back to Indy by mid-afternoon tomorrow. Caiden will return to school on Thursday and Avery and I will be off to doctor appointments (already!). I am sure it will take Jon and I the next several days to catch of on mail, phone messages, etc. We have to get the roof re-do going quickly if we still have time before winter sets-in and we have to find a cheap used car to replace the Cavalier that we "lost" in the hail event that occured several months back now. Jon had been riding his bike to work all summer, but he is not so keen to be riding it to work in the snow that will surely come this winter. We'll see how that all turns out. Again, we can' thank you all enough for all the support and strength you have given us through these difficult last months. We could not have made it through without you. We very much are looking so forward to seeing all of you and getting to thank you personally! And, we can't wait for you to see our little angel with your own eyes. It won't be long now... God's blessing and love to all!

And the beat goes on...

Hello to all. Sorry to have left you all hanging for a couple of days with no word from us. Having Avery at the house has been great but keeping us all busy. She is still quite uncomfortable for big chunks of time...and we share the computer here with a house full of people. That has made it a bit more difficult to get to the computer at a time when I actually have the chance and it is free. Well, as I mentioned, Avery is here at the house and doing OK. She does have a new hairdo thoough! I call her my little Sinead O'Conner now. We found some electric clippers here at the house and shaved the long side down to about 1/2 inch so it is more even with the left side. She is still pretty of course! It actually looks so much better. Who looks good with half a head of hair? Crazy surgeons! I'll post pics as soon as I can. She is still having periods of uncomfortableness throughout the day, and at night sometimes too. Aside from the night before last, she has slept fairly well through most of the nights here. I think she is making some slow improvements each day. So, hopefully we will get back to her "new old self" before too long. We changed her formula to a soy-based type yesterday thinking that it couldn't hurt and that it might help. I'm not sure if it is making things better yet or not...we probably need at least another day to determine that. The diarrhea seems to have slowed down today though...so maybe it has made a difference. I also started giving her Tylenol again yesterday evening because I think she is cutting two back molars, which can be very painful. Actually, I know she is cutting at least 8 teeth right now...but I'm not sure that there are not a couple more starting to make there way in as well. Some are a good ways through, others are just erupting or about to break the surface. Nothing like getting them all at once! She had not a single tooth at 12 months of age. We definitely have to get back to the dentist when we get home. Dr. Farthing will be quite surprised! We all continue to do well. Caiden is enjoying having us all at the house all day. He got to go trick-or-treating on Monday in a little neighborhood here in Baltimore. Jon and I took him to the Canton area based on a house staff person's suggestion. It was really fun and he made a great Harry Potter. Everyone kept commenting on his oufit as he trick or treated and kids would walk by and say, "hey, its Harry Potter". We had several poeple say it was the best costume they had seen all night...that made his night! He had so much fun and so did we. We put Avery in Caiden's lion costume from a couple years ago (the one my Mom had made)and she looked so cute. We couldn't leave her in it long though because it was too hot. It had been 70 degrees that day here. We took lots of pics of course that I will also post as soon as I can. We keep hoping that Avery will improve enough in the next day or two to allow us all to get out of the house and go do something fun. There is certainly plenty to do around here...hopefully that will work out before we have to head home. In any event, it won't be the last time we are here. We have to come back in about 5 weeks to see Dr. Jallo for a follow-up. We will also be back in March or April to see Dr. Kossoff for a follow-up. So, Baltimore will be in our plans for many months, and years to come. I'm not sure if I mentioned before that we had a visit from two pastors last week. One is a pastor in Virginia that used to be the pastor at Mom and Dad Paauwe's church in Florida (Trinity Presbyterian) and the other is a pastor here in Maryland. It was really great to have them stop in and talk to us. The pastor from Maryland is actually the father of a girl who had a hemispherectomy. She had the hemispherectomy here at Hopkins when she was 7 years old. She had had a stroke in utero and had a lot of seizures until the surgery. She is doing really well now. Actually, I'm sure that we met her at the reunion back in July. Anyway, it was so great to have his perspective on things as a parent, a father, and a pastor all tied into one. He offered a lot to us and we hope to get to meet his wife and daughter and son before we leave here. It is so great to have the resource of other parents who have traveled this road before us. We have missed Ms. Jackie, Darby and Finn for a couple weeks, but are hopeful that we will get to meet up with them before we leave. They have not been able to be here on the Wednesday that they normally come to do crafts with the children in the house. They have been so wonderful to us and we want them all to meet Avery. We hear that Darby has a truck load of stuff to give Avery. We can't wait to see it all. Hopefully, as Avery starts to improve, we can finalize our plans to get home. If she does well, the next couple days we may be able to get out of here on Monday morning (if Dr. Kossoff doesn't think he needs to see Avery in person in clinic on Monday). Otherwise, we may stick it out until Tuesday or Wednesday. We are all ready to get home...we are really missing everyone! But, we know that the drive will be very long if Avery is upset the whole time. We pray that she will be better by the time we HAVE to leave, if not earlier. We'll see. In any case, we will have to have an "open house" when we get back so that everyone can stop in and see Avery and Caiden. I know that everyone has been missing them! Well, I think that is about it from here. We keep praying that Avery continues to improve every day and that the you-know-whats stay away. We thank you all so much for being a part of this journey, for supporting us and caring for us. We are so very grateful. We can't say that enough, yet, it seems too little for the mountain of support we have received. Just know that you have touched us deeply and helped us in ways you may not even realize. Love, Holly

End of the line...

She's Out! Finally. Praise God! We got the OK to take Avey back to the Children's House early this morning and we were out by about 2:00 this afternoon. All her stitches have been removed and the incision looks so good. Really, it is hard to believe how great it looks this soon after. We are still having reflux/GI issues with the back arching crying and multiple loose stools per day. We are hoping that some of that will resolve in the next week or so, especially as she finishes the antibiotic she is on for the UTI I mentioned a little over a week ago and once she complete the wean from the methadone (pain med). If not, Avery has an appointment to see Dr. Stanley (the developmental pediatrician she sees as Riley) on Nov. 10th and I know that Dr. Stanley will order some tests if she thinks there are any potential problems needing investigation. She is really good about that stuff. I know she will be excited to see her post-hemispherectomy. Avery has at least been sleeping better at night now for the past several days. Tonight she is sleeping without the Melatonin I gave her on previous nights. If she can sleep without it, then I certainly don't want to add anything to her system at this point that isn't warrented. We'll see how she does through the whole night. We are anxious for her to get past all this "GI" discomfort and to start seeing what gains this surgery might bring her. We have all been a little nervous about vision post-op, even though we "know" it shouldn't have effected it any further than the malformation already had. I think it will just take time for her to be able to "show" us that she CAN see, as well as what else she may be able to do now that she would not have been able to do before. We also are certainly still praying that the "yuckies" do not make a return. We think things are good so far on that front, but we can't be positive just yet. Though, we have not seen anything like we saw before surgery. We are just so glad to be out of the hospital...it was so good not to have to be over there tonight and to have the 3 of us to wrestle her around when she is so upset. We will be off in search of activites to do tomorrow for Halloween. Caiden is going as Harry Potter. He is so excited. His outfit is great, so I think he will make a good Potter. I'm sure he will have plenty of stories to share with all of you when we get back. Well, I am sorry this is so short, but I am exhausted....ran all day on only 3 hours of sleep. Love and Hugs from all of us. We can't wait to see everyone again. It won't be long now!

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

Surgery #2: Day 7 & 8 Post-Op Report

Thanks for all your words of support and encouragement and prayers over these past couple days. They have been helpful during this time of stress. Just to let you know, Avery was moved to a more private room yesterday, so we have a new number, yet again, for her room. It is 410-502-4001 if you need to reach us there. Avery has still been doing the back arching/screaming thing since I last posted. She is barely resting...4-5 hours a day at the most and usually no more that 3 at night (actually it is usually after 3 am before she finally rests). That means the overnight person is not resting much either. In fact, Avery is usually most comfortable when you are most uncomfortable! See, she is not sleeping well in the crib...she is mostly sleeping on us. Lying on her back and stretched out is the least comfortable for her, so the crib is not the best spot for her right now. I stayed over on Mon. night and then stayed into the afternoon on Tues. so that I could get the doctors attention to focus on Avery and her current distress. On Monday evening, she was in such agony every time they would start to feed her. Finally, at midnight, Jon and I asked them to just stop the feedings and put her on IV fluids overnight so that her stomach could have a break and she could try to rest. She ended up only sleeping a couple hours on me. She screamed that next morning from 7:30 until 8:15 non-stop and was very distressed. So, when the docs came around, I made them realize how upset she was and said that something had to be done to help her. Dr. Jallo ordered a head CT to rule out anything there and the pediatricians finally ordered an x-ray for her stomach/intestines. They kept her off feeds until later in the afternoon. Around noon, after being off feeds for 12 hours, she was the best we had seen her in days. Everyone is agreeing that it is stomach/GI related. While she is being treated for reflux, no one is sure that reflux is the primary problem (actually they think it is more likely a symptom of another problem). So, the pediatician in thinking that maybe she has a bit of a GI bug that is causing her problems. She has had so many loose stools and you can hear her gut moving in big waves (it is not a contant whir of movement, but these big, sudden and loud "rurr" sounds). If she is calm when that happens, it's usually not too long before she is upset again. The x-ray showed that she has a lot of air in her intestines...so those things all point to a GI system that is, at the very least, out of whack. So, it looks like it will just be slow going trying to get her GI back to normal...trying to keep her comfortable (hah!) in the interim. At least the resident last night finally listened to our request for Carafate and gave orders for that to be given. We were just like, "Hey, it is worth a shot. You've been willing to give her Ativan, benedryl, and pain meds without fail and without seeing great or consistant relief with them, so why on Earth can you not try giving her this." We had gotten the idea about Carafate from another parent whose child had surgery for HME and then had severe reflux problems after. It seemed logical that if it worked for her daughter, maybe it could work for Avery. I think sometimes the doctors just don't appreciate that you, as parents, might have something beneficial to offer regarding treatment of your child. I'm sure that parents talking to other parents of children who have gone through the same sorts of proceedures is their worst nightmare. They want us all to know that each child is different, even if their diagnosis is the same (you know, like that stock caveate "past performance is not a guarantee of future results"), so they dread the "but so and so did this" or "so and so said this worked for their child." Anyway, we parents are very thankful to have each other as a resource. Hopefully, she will start to improve over the next couple of days, as she is off her continuous pain pump and off the steroid (given to conteract the brain swelling from surgery). We are certain that those meds have not helped her GI tract any. If she doesn't start to tolerate the feeds better (as they are slowly reintroduced), then they are going to have us go to the Kennedy Krieger Institute. She can be an inpatient there and they have really great feeding specialists who they think would be better to deal with her if it doesn't start to resolve here soon on its own. She also would have much less exposure to potential infection risks there as opposed to the hospital. She would also be able to get physical, occupationl, and speech therapy there as well, as they are primarily a rehabilitation establishment. They have a really good reputation in that field too. So, that may be where we end up in the next day or two. It probably would be a good thing, especially from the therapy standpoint. She hasn't been able to get much therapy in these past 4 weeks because she can't be very cooperative because of her discomfort. We'll see...I'll let you all know what happens. Jon is with her now. He relieved mom from the overnight this morning. I'm not sure how things have gone the past few hours. I only know that she still didn't sleep but about 3 hours after 3:30 this morning and then was woke up by a resident who opened her eyes to check the pupil response with a flash light. That ticked her off and set the whole wheel back in motion then. We are going to post a sign today that reads, "NOTICE: If you are not Avery's primary doctor or one of his/her immediate representatives, DO NOT examine or disturb her if she is sleeping without checking with her parents/caregive first! She is sleeping so very little at this point in time (because she is in such discomfort) that it is imperative to her healing to be able to rest when her body finally allows it. Thank You from Avery's Management" It is seriously ridiculous that they have to touch a sleeping baby at 6:30 in the morning! Jon and I have been good about not letting them touch her when she is finally resting, but this resident kind of snuck up on them this morning. Everyday it seems a doctor is asking where her vitals are and are shocked to see no blood pressure reading from over night. We tell them, "You can't get one on her when she is so upset, and when she is finally calm and sleeping, we aren't allowing anyone to touch her. Sorry. You'll have to deal without it." So, I think the sign is in order. We are receiving you cards and packages/gifts. Thank you so much! We love the surprises and the great thought that you are putting in to them. Until I get the chance to send you individual, more formal THANK YOUs, please know that we are so very grateful and touched by your thoughtfulness. Much love from all of us to all of you!

Surgery #2: Day 6 Post-op

Hi all. Sorry I did not post yesterday. It has been a draining couple of days...and right now I am exhausted so this post won't be too long. I spent part of yesterday (Sat.) afternoon and the Saturday overnight with Avery. She was really mostly upset during the day on Sat. and she only slept 4 hours Sat. night. She is back to doing the back arching/screaming/posturing again. Jon spent the day today with her and she continued in much the same fashion, but actually probably worse. When I got there this evening, she was so mad and just pouring sweat. I thought she had thrown up on Jon...that's how much sweat he had on his shoulder from her. Her hair (what is left) was soaked. I took her and managed to get her calmed down for a bit, but it wasn't for long. She then got going again (I mean really going...nothing I did helped her) and had not stopped by the time my mom arrived for the overnight shift. I have to admit to you all that this is so mentally exhausting for me right now. My nerves are on edge. There is nothing worse than seeing your child in such agony/discomfort/frustration (whichever it is) and feeling helpless to ease that for them. It is nearly more than I can bear right now. I feel like I want to just cry, but I don't think I would be able to stop if I start. I keep thinking, "This can't last forever"...but what if it could? I hope Mom manages to get a little rest tonight. We just don't know what these episodes are all about. We are working her off the pain meds (in case it is a reaction for her to them), have taken her off the laxative (in case it is causing cramping...she is having 2-3 loose BMs daily), have spread her feeds out better over the day to decrease the volume at each feeding (in case her stomach is processing things slower). We keep thinking it must be GI related, but I honestly just don't know. Neurosurgery and neurology keep saying she looks great (and, I can admit, she sure does "look" great!) and that we can probably go home in a day or 2...they need to see her when she is screaming for 3 hours straight and they'd see she is not "doing" great right now! This is not normal and it is not merely her "new" personality...is it? To top it off, she has a red cone shaped patch on the right side of her head just above the ear where her hair is now falling out. No one seems concerned about that either. This happened with the first surgery too...and the doctors then diagnosed it as likely being a stress induced hair loss. I guess that makes sense. It just makes you want to know what is causing such distress to her body. Well, I'm sorry to be a downer, but right now I am having a tough time dealing. Maybe a good nights rest will help...I am off to bed. Please keep praying...we need more strength right now.

Surgery #2: 4 Days Out - Update #2

I just got bac k from seeing Avery again after dinner tonight. Jon had been with her since 12 noon today while I slept and my mom hung out with Caiden. She was doing great when we got back over there at about 8:30 pm. Jon had gotten approval to hold her at about 4 PM today and he said that she had been doing really well since then. Apparently, she burped and passed some gas (sorry, I know that is probably not fun to read, but it is true and may be the source of her discomfort and madness), and settled right down once he picked her up. She also finally had a big BM (the first one since surgery Monday), so from a GI standpoint, things must have felt much better. We have off and on really thought that maybe GI issues were responsible for the back arching/crying evetns and we are really starting to believe that even more confidently. So, I will approach that tract with the doctors tomorrow. I am just wondering if changing her formula might help. They have her on the same stuff that she was on prior to surgery, except that the protein powder (we were adding that to the over-the-counter formula so that her protein needs were met even with her low calorie needs) additive is different than the one were had at home. We were using ProMod, which actually I guess they have stopped making that all together. So, the hospital has a different brand they use which Avery has never had before arriving here. It seems possible that it could be causing GI sensitivity or discomfort for her. So, we will talk to the docs and the nutritionists about that as soon as we can. Since she was so comfy when we got there, mom and I worked on changing the bed clothes so that she had a clean and comfy spot to rest. We had planned to give her a bath after, but she stayed sleeping even after Jon got up and laid her back in the crib. WOW! Since these surgeries, I can't remember when she last stayed alseep when we moved her. Thanks to God for that progress and the rest for her body. Since she was resting, I told Mom that we just needed to let her be and that she should take the opportunity to get some sleep herself before the nurse had to mess with her again at midnight. We can wash her up tomorrow when she is already awake. So, I left with Avery sleeping peacfully and with Mom lying down to rest and came back to the house to spend some time with Jon and Caiden before bed. I'll get to spend some time with Caiden tomorrow afternoon too, while Mom sleeps (if she needs to depending on how much she gets tonight) and Jon hangs out with Avery. I'll be back on evening and overnight shift tomorrow. Mom and I take turns with the overnight...Jon has a tough time staying up all night if he has to. He is the early morning person out of all of us. It's a good thing we have both. Well, just wanted you all to know that she finally calmed and got to rest today. That's a great big step in the right direction! YEAH...all your prayers are helping! One last thing...if you take a moment to look at the blogs and links I have added to this page, you will notice that there are links to information about some other children. These are children of people we have met here in Baltimore (either this trip or before) or through some other avenue who are stuggling with their own major medical problems (some the same as or in a similar line to Avery's and some completely different). I ask you, please, to include these beautiful children and their families in your prayers. They all are traveling hard and scary (and yet hopefully hopeful) paths and need as much support and strength as possible. They have all touched our lives...maybe they'll touch yours too. Take a moment to learn about them by clicking on their links. Thanks so much!

Contact Info Update

Just wanted to provide a quick update on our contact info: Address at the Children's House Aver Paauwe and Family c/o The Children's House 1915 McElderry Street Baltimore, MD 21205 Telephone Numbers Avery's IMC room (direct): 410/502-4013 Children's House room: 410/614-2560 (ask for room 203 if you get an answer, if on overnight sevice, enter 203 as extention) Holly and Jon's cell: 317/409-4500 (will not be on if we are in Avery's room; leave mssg and we'll return call) Marilyn's cell: 812/549-7078 Hopefully, those that want to get in touch with us can do so now. There will nearly always be someone in Avery's room and thus at that number.

Surgery #2: 4 Days Out

I spent the night with Avery last night. It was not a very restful night for her. I am not sure if she is in pain, is frustrated, sensitive to the "newness" of her awareness, etc. or a combination of two or more of those things. She was getting really worked up by late morning. Jon came over about 9 am and she was just so upset from then until I left at about noon. She is back to doing the back arching/crying/breath holding from before. We still haven't seen anything that we recognize as a yuckie. She has done a couple things that give me pause, but they could be the result of other things. Really, only in the last about 24 hours has she been more awake than sedated, so she is having to re-adjust to the world. I keep trying to keep in perspective that she is probably very much like a newborn in response to the "newness" of her environment now. With this surgery, she likely (and hopefully) has a whole new awareness of the world...and I am sure that it is a bit scary for her. It doesn't help that Daddy and I have face masks on when we are with her. I'm sure she can't rectify that in her mind. We just don't want to pass any cold germs to her, so we are adament about wearing them when we are with her or anywhere close to her. We continue to try to just take things as they come...one day at a time. We are rotating who stays with her so the same person is not always sleep deprived. My mom is resting now in preparation for the night shift tonight. Hopefully, by tonight or tomorrow, we will finally get to hold her. They have been slowly working in getting her head more and more elevated and turned back to midline, after keeping her flat and with the incision (left) side of her head facing up. Please keep the prayers going for a full, and more comfortable, recovery free of any of the yuckies. We look forward to the day we get to leave the hospital. Caiden may be starting to bore with his time here. He has been more trying lately. I have taken the Pac Man game away for 2 days, along with the Harry Potter movie this morning. I think he needs a good day of attention from Jon and I. Hopefully, we can do that soon. Thanks to everyone who has called, emailed, and stopped by over the past couple of days. We continue to draw strength for this longer-than-planned stay from all of you. With much gratitide and love, Holly

Surgery #2: Day 3 Post-Op

Avery was moved to the step-down unit today...to what is called the IMC Unit, where we were at just before they took her back into sugery. Her arterial line was removed, as was one of her peripheral IVs. They also removed the drain from her head and stitched the opening closed. They had to remove her head bandages to do that of course, so we got to see her battle scars today. I can't believe how great she looks! Really, it is amazing. She has almost no swelling and no fluid pockets between her scalp and skull. She has still been pretty sedated today so she slept a lot. She has awoken several times, but she mostly fusses when that happens. She is still arching her backing and crying/breath holding, but not as bad as before. I think she just has a bit of a temper and is probably reacting to the pain and the "newness" of her world. She also was restarted on feeds today...so we are one step further down the road of recovery. I am headed back over to spend the night with her here very shortly...just want to give all of you a quick update. Please keep praying that the recovery continues to go smoothly and we don't see any of those unwanted things...so far so good. Thanks for everything. Hugs from Baltimore!

Surgery #2: Day 2 Post-Op News

Avery has done very well today. They removed her breathing tube at about 1:00 today. She didn't have any trouble with that. She was on an additional blow-by of oxygen right after, but her blood gases were so good a couple hours later that she is not on any extra oxygen now. She is doing it all and well on her own. YEAH! She had woken several times. Some of them were content periods and some of them were crying periods. But she has calmed well and quited with a push of her pain pump. She looks great. The swelling is really very minimal. She can open both eyes. Following the first surgery, her left eye was swollen shut by this time. Dr. Kossoff (her neurologist) was really impressed with how well she looked today. He is feeling pretty positive with her recovery. We also saw a couple other neurologists who also seem to think things are going well so far. One said that he had just come from a conference with Dr. Jallo and that Dr. Jallo was "pleased as punch"...so we are praying that things continue to go so well. It is possible that she will get moved to the Intermediate Care Unit tomorrow sometime. So far we have not seen any of the you-know-whats; we are cautiously optimistic. They will turn her head to midline tomorrow and she will likely get to lost the catheter and that arterial line in her groin. Please pray that things continue to go well and that she is free of the mean things. In any case, we are so glad to be on the road to recovery from this surgery. She is such a tough little girl. We are amazed at her strength. Jon, Caiden and I are working through our colds. Caiden is doing much better and I am at least no worse. Jon is dealing with a very stuffy head. Hopefully, in a couple days, we will all be well past it. I know Caiden is wanting to see Avery so badly at this point. Mom and Dad P got off at the airport OK and should be home by now I expect. Hopefully they can get everyone in Florida updated on their perspective of this surgery soon. We just finished dinner here. Caldwell Bankers made dinner for the families here in the house. That was so very nice. Actually, there are very often dinners for the families put on by various groups. I think this week there is only 1 day that a dinner has not been provided. It is such a blessing to be here and to have such great support. Well, I don't kknow much more. I will continue to keep you all updated. Thanks for all the wonderful emails today. You are all so kind and wonderful to us. We love you.

Surgery #2: Day 1 Post-Op Report

Avery has been comfortable today. They have kept her pretty sedated and pain free under the neurosurgeons orders. They want her to be comfortable and give the brain a bit of time to heal and re-equilibrate without a bunch of movement of discomfort reactions on her part. We certainly agreed with that being just the day following surgery and all. Her head bandages and wrap are still on and she does not seem as swollen as she was by this point following the first surgery. That is nice to see. Her hemoglobin was a bit low today, so they did take her for a CAT Scan to be safe. It was fine and everything else was also good...nothing was pointing to any problems. There are plenty of valid and unconcerning reasons that her hemoglobin could be low...one being the fact that she has hereditary spherocytosis which itself can alter the number to the low side (or below) of normal. I think hers has always been a bit lower if I remember correctly from all the blood work she's had done in Indy under her Hematologist following the spherocytosis. Anyway, not a concern at this point anyway. And, it was great to have a CAT scan that didn't indicate there were any problems they were not aware of or seeing signs of. Thank God for that! We also have not seen any sign of the "yuckies" and hope not to. Tomorrow they plan to extubate her (remove her breathing tube). I'm sure she will be able to share how unhappy she is with us then! What a strong little girl she has been though! She has come through 2 huge brain surgeries in less than 3 weeks and did so with no real problems or concerns while in the OR. Talk about answered prayers! She was resting very peacefully when I left her at 11:45 PM. Tomorrow will be a more interesting day for us all. Please keep her in your prayers. Pray for a quick, easy, and full recovery and that the you-know-what are gone for good. We all will be doing that on this end. Mom and Dad Paauwe leave us tomorrow. They were able to come back up here for a quick trip to sit through the surgery and support us and relieve us all today. That gave is a much needed rest today! My Mom, Jon, and I are pretty much constantly busy with either sitting and helping care for Avery, advocating for her, taking care of Caiden, washing clothes, making sure we all get fed and cleaned up from time to time, etc. Thank goodness my mom has been able to be out here with us all this time...it would be tough without her help, and her knowledge too. We are very thankful for all her help. We are also thankful for everyone else's help everywhere. So much has been done for us and we are grateful for all of it, no matter how "small" the deed. We, personally, don't think any of it has been small. We hope that being a partner in this journey with us has given something back to each of you. Avery has brought so many people together; it's incredible! How blessed we are. On a bit of a bummed note, Jon and I did not manage to out-run or out-vitamin the cold bug Caiden got and is still dealing with a bit. When I awoke this morning and consciously swallowed, I knew instantly that I had not escaped it. Jon had already felt it coming on yesterday. So, know we are medicating ourselves and trying desperately not to pass it on to anyone else. To that end, we are only going in to Avey's room with face masks on. Not the most comfortable thing to wear for hours, but well worth not passing it along to anyone else...especially not our Avery or another sick child. Caiden is doing better each day though, so we know that it won't last forever. Well, I guess that is about it. Not much more I can think of to report. Thanks for all the emails, calls, prayers, mail, etc. yesterday, today, and each day. We love getting them! Thanks to God for all He has provided today and yesterday. We look forward to all He will provide tomorrow. Much love and respect, Holly

Starting Over: Surgery #2 Report

Hello all. Thank you for "being with us" today. Avery did very well insurgery today. Many prayers were answered on that front for sure. She was put asleep at 8:15 this morning with me by her side, and she was wheeled out of the operating room to the PICU at 6:45 this evening. It was a long day, but a good one. Overall, the surgery went very well. Avery had only a little bleeding and her stats remained stable the entire time. We saw her as she was being wheeled to the PICU. She looked really good considering what had been done to her. Thay had her head bandaged this time...which was good for me. I needed to see her doing well before I saw the incisions this time. Today was just harder for me than the first surgery day was. She, however, has amazed us with her strength! She is one tough cookie...even the doctors think so. A true gift from God. Dr. Kossoff and other team members kept us informed throughout the day. At one point Dr. Kossoff came out to talk to us and told us that he had pics if we wanted to see. Jon said "sure" right away...I was curious but still quite leery. So, I looked but at a distance that I felt would not really allow me to see detail. That was fine, until he actually played a video clip from the surgery. That got to me and I had to turn away...mostly because it showed the actual removal of the parietal lobe. I guess I'm just not ready to see that yet...maybe someday when she is sitting in the other room safe, sound, happy, and healed. Sometimes it is hard for me to wrap my mind around what I know is true and what I still "feel" that is in contridiction to what is known. The anatomical hemispherectomy had always been harder for me to think about because it is the actual removal of the tissue, not merely the disconnection of it. Even though the end result it the same (or should be in theory), it still seems "worse" to me because it removes part of the body. The surgery could not be called perfect, because Dr. Jallo had to leave about 20% of the tissue behind due to some very abnoramlly large blood vessels in two regions of the left hemisphere, but was a success. It was a very large bleed out risk that he was not willing to take (and, we are quite happy about that). He did everything possible though to disconnect (actually doing a sort of 2-level disconnect) those tisses from the rest of the brain and neuro-pathways to the body. Dr. Kossoff told us that there actually appeared to be a part of the corpus callossum that was not quite fully disconnected as thought to be from before, which potentially could explain the continued seizures following the first surgery. So, this surgery should by all accounts be a success, but of course they can not guarantee us anything. They simply say that they feel good about it and that will have to wait and see. We are doing that and are continuing to pray that God will not allow the seizures to return. He certainly answered all our prayers today by keeping her safe and stable in that operating room. What a fantastic anniversary gift! She is resting peacefully now in the PICU. Since she will be very sedated and out tonight, we are all taking the opportunity to get some much needed rest. Avery only slept 2 hours last night before the surgery...so I also only slept 2 hours and then was up waiting all day today of course. I am finally, utterly exhausted right now. Please keep the prayers up. Pray that this is the start of an incredible journey for Avery...one that we all get to be witness to. One that fully fulfills all our previous and current prayers. Thanks be to God! Holly

Day 17: The Eve of Surgery #2

Hello All! I want to say THANK YOU, THANK YOU, THANK YOU to everyone who worked so hard to make the Benefit Golf Tourney for Avery a complete success today. Thank you for giving your time and talents so generously, thank you to all who donated food, sponsored holes, served as cooks, thank you to those who set-up and cleaned up and did anything in any way to help this tourney happen and to run today. We appriciate it so very, very much. We hope all who played had a great time and we thank you for entering the tourney...for helping us and our little angel. Please know that we wished we could br present, yet it was not in God's plans. We owe you all so much and we hope to be able to thank each of you in person by Thanksgiving. Until then, please just know that you have made a difference in our lives and we are grateful. Avery has been about the same the last two days, but has not slept much at all. I hear from some parents that there children didn't sleep much after surgery. Some are on Melatonin for that now. The surgery must have some affect on the sleep cycle of some kids. We will have to see how Avery does on that front after tomorrow's surgery. It's good to know that it can be treated with some success if necessary. They plan to come and get her between 6 and 7 AM tomorrow morning. It will take a couple hours to get her IV's and other lines in, so actual sugery probably won't begin before 9 AM (8 am Tell City/Central time). She is currently is without any lines (the central line had to be removed yesterday as it stopped functioning properly). When I arrived back after dinner last night, I found them trying to put an IV in her leg...to no avail of course. I told them not to attempt anymore lines without calling anesthesia to do it. Later, we actually talked them out of inserting anything else before surgery tomorrow (she has so few potential access points that we did not want them to compromise any of them before surgery). So, she is now getting Diastat as needed for breakthrough seizures instead of IV Ativan. It will be a longer surgery overall, as it is significantly more involved. We will try to keep a few people updated who will then spread the word along to others, and so on and so on. We are all praying hard that God will have great plans in store for Avery tomorrow and that we will be receive an awesome anniversary gift. We pray that God will keep her safe and stable through the surgery and that he will use His hands to guide the surgeons and and that He will provide the necessary knowledge to all who care for her in the operating room. We pray that she will return to us safe and sound and with a whole new quality of life just around the corner. We pray that He helps her surgery scars and such to heal as quickly as before and that the seizures are sent away never to return. We pray for the strength that we all will need to make it through tomorrow. Caiden has had a rough couple of days. He is sick. I guess it was inevitable in some ways, being potentially exposed to so many germs just through contact with others here at the house and at the hospital. Mom and I took him to the clinic yesterday to be seen by a doctor. It looks like ti is likely just a viral infection, but we will here in a couple of days if anything showed up in a culture. He has a wickedly sore throught and is tired. He has also had a fever off and on. So, he is on a medication to treat his symptoms and on Tylenol/Motrin rotation for the fever and throat pain. Now, we are all pumping ourselves with vitamins in trying to avoid getting it ourselves. We pray that tomorrow will be better for him. On a sad note, I heard today from a parent on the Yahoo hemimegalencephaly group. Her child passed away yesterday. He was about 1 year older than Avery, but was not able to have the surgery due to some abnormal areas in the non-HME side of his brain. Please include this family in your prayers tomorrow and int he days to come. They are certainly dealing with the most difficult days of their lives. Many blessing and many thanks, Holly

Day 15

Avery had a pretty good day today. She was off to have an MRI this morning at 9:00 AM and was finished completely at about 12:30. They mangaged to get an IV in her left hand during that time too, which is great. However, the docs have decided against removing the central line. The anesthesiologists actually want to save it for surgery if it is still working and there isn't any real infection concern. They will put in a PIC line during the surgery, so they are saying, which will mean that the central line should be able to come out within a couple days of surgery. The PIC line can be left in much longer term if needed. We certainly hope there will be no cause to keep it longer than the post-op recovery period. I put Avery in her red Tumbleform positioning chair today, and she seemed to like it. She sat in it for a least 2 hours without getting too upset (al least not for any sustained period). Of course, she had had a PRN does of Ativan for a seizure cluster just after I put her in it...so that may have helped her stay so clam. She did stay awake though. It was so nice to see her doing something "normal" from before surgery. I like to think that she recognized it as something familiar, and thus was relieved to "know" something in such an unfamiliar place. The nurses loved seeing her in it. They also want her to be better and have more happy periods throughout the day. She has had some really great nurses in the IMC. She has also had some really great and thorough floor team docs. We owe them a lot for taking such good care of her. Jon and Caiden went to the Science Musuem this afternoon and had a great time per report. It has been cold here today....supposed to frost over night. Jon and I realized that neither one of us brought a "winter" jacket...so we are hoping this cold of a cold spell does not last long. We will see. Well, I don't know a whole lot more at this point. We are scheduled for early Monday morning. It will be a long day (longer than before) as it is a more involved and time-intensive surgery this time around. We are anxious, but eager to get beyond all of this and see the results in a better quality of life for Avery. We want nothing more. Love and blessings from Maryland. Holly

Day 14 Still the Same

Nothing too much new to report. Avery was pretty much the same today. Although, I don't believe she bit, threw-up, or you-know-what on anybody. Daddy stayed with her most of the morning and day after my Mom's overnight. I spent a good amount of time cleaning our room at the house...two weeks and 4 people make quick work of a clean room. It had to be done. My Mom and Caiden got heir hair cut...Caiden's was getting very scraggly. I spent the evening and early night withAvery. She rested for a bit and then woke up a little fussy and with a few seizures before my Mom arrived for the overnight shift. We bathed her really well and cleaned her head all over before I left for the rest of the night. She was only a little fussy during that time and was looking pretty Sweet Pea-ish when we were done. We slathered her with the Sweat Pea lotion sent by the Lewis's from IPC (thank you...so appropriate and awesome smelling). Mom had made her some comfy all-cotton gowns (you know how bad those polyester hospital gowns are) by cutting some store-bought shirts and sewing themso that they go on in the front and velcro in the back. We put one of those on her. She should be much more comfortable. So glad that my Mom can come up with and do that kind of stuff! Dr. Jallo came around today and said that we were on for Monday. He seems comfortable with proceeding with surgery so quickly...actually thinks it will be better and easier in some ways than it would be if we waited 6 months. Of course, the risks are about the same, except that there is higer incidence of needing a shunt and risk of more scarring. Jon asked if we had a warrenty on the first surgery and Dr. Jallo got a great laugh out of that. Not sure that Dr. Kossoff found as much humor in it when Jon asked him yesterday. Maybe he thought he was serious. We thought it was funny. Avery goes in for an MRI tomorrow just to give the doctors an idea of how everything looks now...helping guide the surgery team. They are also going to try to get 2 peripheral IVs placed at that time and pull the central line which is still in her neck. That would be great because the central line has been in so long that it is becoming an infection risk. I certainly wish she were not so hard to get an IV on; the central line would already have been gone if she wasn't. Also, not sure if I posted before, but the possible Staph infection they were treating her for turned out to not be one, so they stopped the antibiotic the other day. YEAH! We learned today that we will be having a couple of visitors in the days to come that will be in Baltimore, seperately, for other reasons. We are so glad that they want to stop in and see us and are looking forward to the visits. Hope this finds everyone doing well. Much love from all of us here in Baltimore to all of you. Holly

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.