Baseline Belly

John slept better last night than he's slept all week and this morning he woke up with a baseline belly - um, well, okay his belly looked like it should, not swollen or distended and he's been in a fantastic mood all day. It makes me think that we won't be in Omaha for long, and though at this point I'd still like to skip the trip I think it's in his best interest that he gets a good looking at before he comes back home. I imagine our days in Omaha will center around walking everywhere in the hospital and trying to see how many automatic doors we can open. I'm toying with not taking my computer, as I really don't want to have to lug the screen and all with me if we're just coming right back home. What I should be doing while I'm there is knocking a few books off my reading list, at the moment the pile is getting pretty deep, but for now it's back to sewing some badly needed clothes, contemplating what I'm cooking for brunch with the OAFC kids tomorrow and toying with what I need to pack.

Back to Omaha

I know somewhere around here I've written posts about life being steps forward and steps back and we are in the middle of another of those backward steps. Actually we've been at this since Sunday when John started complaining that his stomach hurt, and it's been up and down since then. Because there just is no real telling what is going on right now John is going back to Omaha on Monday to stay for a week or so until things settle down and he is moving forward again. Today he seems a little better than yesterday, and even his x-ray looked better, but since he still isn't on full g-tube feeds and doesn't have enough reserves built up to delay any longer so we're taking him back. John and I will be living in the Lied center, thankfully he doesn't have to be an in-patient and while it would be pretty easy right now to throw myself a big old pity party there isn't much use in that stuff, so we're thinking of the positives here. The biggest being that John's doing well, still happy and playing and running all over the place, that he's not sickly looking or needing to be admitted to the hospital for big scary stuff. They are going to do an upper GI test on Thursday to see exactly what is going on in there, and while there is ample evidence that this could just be run amok bacterial overgrowth we still need to check. So this weekend we'll spend packing and getting ready and spending as much time together as possible, and hopefully next weekend we'll all be home again, it would be surreal to be in church this Sunday and next and have spent the middle in Omaha, but surreal would be good :)

Merry Christmas!

Our little boy is doing much better, and is still home! He was feeling too sick to go to Christ Mass and cried, he kept signing 'church, church' and was so sad when he couldn't go. We did make it to Christmas morning Divine Service and he was great, I could tell he still wasn't feeling the very best but he was so happy to be there and see everybody and even signed 'amen' for the majority of the 'amens' that were said. After worship he learned that he could hold onto mommy's sleeve and the stair rail and bump his little bottom down the steps onto the floor. At the bottom of the 3 steps he would sign 'more please' to be lifted back up so that he could bump down again. Since he was up early enough to open packages before church he was pretty pooped afterwards and took a nice long afternoon nap.

He was so excited to unwrap the presents under the tree, that when he woke up early Christmas morning he kept telling me 'open, open'. At first I thought he wanted me to open the door that goes from his bedroom into the hall, and then well duh, I figured out that he meant the presents. I had told him the night before when he was getting ready for bed that the next morning was Christmas and he got to open all the presents under the tree, and when he woke up he was ready NOW! I figure he's pretty full-fledged 4, as he ripped the paper off of each present, hugged it, then tossed it on the floor and started signing 'more, more' as fast as his little fingers could sign. I was happy that at the end of the presents he was ready to play with things and not sad that there weren't more.

John's Christmas evening went well, and today we took him into Columbia for a follow-up x-ray and weight check. His weight is now 13 kilos, down a bit from Monday and his bowel is less dilated. He's back on full g-tube feeds and down to just his regular IV fluids. He is dealing with yeast again, but as soon as the big antibiotics were prescribed we all knew that it was coming. Tonight he is resting peacefully in his bed, his belly doesn't hurt and it's not huge and swollen and as ever he's still our best Christmas present.

All I Want For Christmas...

...is to be home, and thankfully so far we are. John is having a rough day, that started yesterday with some belly pain and has increased through the day enough that he's now resting on IV fluids through the night here at home and we are calling Dr. Kersten again in the morning. Dr. Kersten is another of the wonderful docs at University Children's in Columbia, the one who turned us onto the International Cafe that makes the best gyro's in town, and the one who today went out of her way to help a little boy make it home for Christmas. Working with the great folks at our home health agency she got enough fluids for John to stay home for a couple days to see if his belly will settle down on its own. So this Christmas while we are celebrating the birth of our Savior we will also be celebrating His love that is shown through the hands and hearts of doctors, nurses and pharmacists to a our little boy and to us as well. We are in hopes that John will be feeling up to the worship service tonight and wake up Christmas morning feeling better and ready to play!

Just One Bubble

Tonight John blew a bubble, and no not out of his nose this time thankfully, he and I were playing with his bubbles and he decided he wanted to blow and he did! It was a tiny bubble and it didn't quite escape the wand before it popped, but WOW, it was a bubble and he did it all by himself!!!

Our week going into Christmas has been rather quiet. John has become a more effective and willing helper, today emptying all the silverware out of the dishwasher and getting all of it into the drawer by himself. He accomplishes this one piece at a time, running back and forth across the kitchen, and all the time with a determined look that easily breaks into a smile. He's a great helper!

It's snowing here and it might actually be a white Christmas, not the mud Christmas that I predicted, but there's still a couple days yet to go. White or not it looks like we'll be home and there just is no better present.

A Good Time at the Bakers!

Okay, so we went to clinic too and even got good news, but most of all we had a wonderful time with our friends the Bakers!



John was thrilled to get there, did the happy dance as we were pulling up in the driveway and started squealing, asking for his hearing aids and to go in before we could even get him unbuckled. Charity and her gracious family had a birthday present for him, and he loved getting to open it. Later he was so excited to wear his new pj's, the other boys had Superman pj's too and John was so excited to be part of the group.



Charity baked a delicious birthday cake for him and as you can see he was so excited to have it. John loves getting to be at the Bakers, so do his parents, and he has the best time when it's dinner time. He gets to sit between some of the children and just loves it. Even though he doesn't really eat much or any of the yummy food that Charity cooks, he has the greatest time just watching the kids and all the amazing things that they do.

The next morning, even before he was all the way dressed John was ready to go play with the kids. When he heard them playing the piano he was scooting himself off the bed trying to get out there as fast as possible. He did get to play on the piano with them, I don't think he added anything musically but he sure did have a great time.





When it was time to say good-bye to the Bakers he didn't cry this time, but only because we were already promising him that he could come back. He gave everyone a hug, and off we went to the hospital for clinic appointments.

John still remembers the hospital quite well and when he got in his gait trainer he took off to run, run, run as fast as he could everywhere. He was such a good little boy waiting for his turn to have his blood drawn. I stood at the front of the blood draw clinic and he would come tell me that he was going to see more Christmas tree, and take off, walk a round of the room and then come back and tell me he was going again. When it was his turn he ran back to the little blood draw room, showed them which hand to use and held real still so that it would get over with quickly. Not one tear escaped his eyes even though they had to poke him twice and when it was all done he ran back to where the stickers are stored so that he could have one before he left.

In clinic he weighed 12.8 kilograms, that makes him 28 pounds 2 ounces and is now a little over 34 inches long. His blood pressure was a little elevated, but a recheck today was fine. He had to get shots for RSV while he was there and that certainly didn't make him very happy, but when the doc came in to see him he was already back to his silly self and when he got to leave he was ready to run, run, run!

John's central line has a little red spot so we had to hang around and get cultures done, but then we were off to see our friend Becky in northern Missouri. John loved getting to visit with her and open a few really cool presents and then was ready to be off again and go home and to bed. Of course when we got home he would rather run all over the place than go to bed, but to bed he went anyway.

Today we got the news that John's cultures came back positive, but it looks like a contaminated sample. He is doing wonderfully, he is wild and ran all over the place at the hospital in Columbia today while we were there to get more cultures drawn. He's going to be getting some IV antibiotics just to make sure that he's okay, but that should end in a couple days.

He's now off of TPN, yet still on IV fluids, but he continues to advance on his G-tube feeds and so we should be done with that central line before long. Most exciting of all he is going straight up on the growth chart and even though he isn't touching the bottom of the curve yet, he sure is headed that direction!

Eat French Fries Please

John has been taking a bath in the kitchen sink ever since he could sit up, well unless dad was around, then dad would hold him in the shower and bath him that way. Dad was busy yesterday morning and John desperately needed a shower, so I put him in the kitchen sink, now that was a sink full! John is now officially too big to bath in the kitchen sink, so it's off to the bathtub for him.

In preparation for John to get in the tub we found ourselves in Columbia this evening picking up a shower curtain and running a few errands since we were in town. When we rounded the corner coming from Lowe's, John got all happy and started kicking and making noise in the back seat and signing to us 'eat french fries, eat, eat, eat, eat french fries, please' of course, Culver's was right there. So we told him that if we got him french fries he had to eat at least 4 bites, after all he is 4 now. We pulled through, got his french fries and he happily ate his 4 bites and then was all done. He just cracks me up.

Our last errand was to pick up a few groceries from HyVee, they have the cool carts that have a little car on the front, John loves to sit up there and steer and point and tell us where to go in the store. We've really only been there a few times, but of course he's sure that he knows exactly where we need to go next, and most often he's right. We mostly only shop the outside aisles of the store and the health market that's in the front so if we wander off into a middle aisle he's pointing and telling us that we went the wrong way. He's 4 and he's now a food critic!

Do you listen to Rush Limbaugh? Well if not and you're the least bit interested in heart health stuff check out this article on saturated fat that he was talking about today. I swear the whole diet/food industry makes me crazy. Thank you to all the Loopers who turned us on to Nourishing Traditions and grass-fed everything!

Happy 4th Birthday!

We started out the morning with a little boy who gave himself his own meds and couldn't get enough of the e-card that Aunt Jodi sent him. He's growing up, but he still loves to lick those beaters. He got a chance at this one this morning because I was making birthday cake this morning because of the disaster that I created yesterday, lol, the whole sordid tale is here.



After all the screaming over the Christmas tree eating daddy, Mark decided that today was the day to let him lay under the tree with him and see that it really didn't eat people. At first John wasn't too sure of this, but then the idea caught on and he laughed, carried on and had a great time. Of course when dad was done laying under the tree and got him out, John signed to him that he wanted more under the tree!



John was ready for an airplane ride and so dad brought it out in the kitchen for him. Today is the first day that he figured out how to make it just go round and round and round in circles. That he's not cross eyed in the picture amazes me because by the time he stopped and I got to take this one he was quite dizzy and swayed enough that he nearly fell off the plane.



I thought he would be done with the plane after making himself dizzy, but no, running into the cabinetry would be fun, and he finally figured out how to back up and get away from something that he ran into so that he'd have a chance to run into it again.



My mom and my Aunt Libby came to see John for his birthday and Grandma wasn't in the house two minutes before she decided that she needed a ride on John's plane too. John wasn't too sure what to think of this, it was kinda funny, but in end he really thought it was much more fun to play dominoes with her.





John wasn't too sure about Aunt Libby when she first came in, preferring to hide around the corner a bit and watch her, but later when it was present time and she had the presents he thought she was cool.



He really enjoyed her helping him get into them.



Last night a sweet couple at church sang Happy Birthday to John, and today Uncle Paul, Auntie Cam and Isaac and David called and they sang Happy Birthday to him too and although he smiled and enjoyed it I'm not so sure that he really got what all that singing was about, but he certainly knew that these were presents and they were for him.







We have been amazed to watch the changes in John over this past year, most especially those changes that have happened since August. Tonight he even blew out his own birthday candle, twice, we let him have it relit 4 times, he's 4 after all ;) The last two relights he was able to blow it out himself. This is a huge first for John because up until tonight he's not been able to muster up enough air to do much more than blow an itty feather off one finger and has never been able to move air voluntarily through his mouth much less enough to blow out a candle. We cheered and clapped, and I learned that you really shouldn't clap with a recently blown out 4 in your hand, oh well that wax peeled right off.



Before Grandma and Aunt Libby left we got one picture of the three of them together. Only thing was every time the flash went off John would act crazy and finally we took this second shot with Aunt Libby's camera and she printed off a copy of the crazy boy for me.



I can't believe it's been 4 years since John was born. Tonight there is snow on the ground much like the night that we were rushing to New Orleans to meet our cherished little boy, but instead of a very sick little boy in the hospital we have this laughing, cheerful much bigger boy who is snug in his bed after a great birthday at home.

Toddler Dance

Yes, that's John, dancing in the dog dish. He was having rather a good time with it and then realized that he could drag it all around the kitchen. Is the dog offended, well, I don't know, she's still hiding under the table pretending she's not here.



This picture is for Uncle Paul, all that noise and carrying on of little boy that he heard on the phone yesterday, this is what was going on here. Every so often John would turn and give Mark this serious look, like, 'what'd you say' and then go on with his throwing of blocks and making of messes.

Recipes and stuff

In talking with my sil today she reminded me that I need to send her the recipe for Mark's mom's cheesecake - oh it's yummy. I've been toying with a blog just for food stuff and so put it there. From time to time I'll add stuff there, keeping this blog mostly about a life with our silly pants boy, so don't worry, you won't miss out on any of John's antics by not checking over there.

Speaking of, John's new trick for the day, he can now pull his shirt over his head, of course he still has his arms stuck in it and that renders him rather goofy looking, but hey he was proud of it.

Hoglet?

Well okay, I'm sure that most little boys who will be 4 years old on Thursday weigh a lot more, but today our little piglet is 28.6 pounds, .4 pounds shy of having gained 10 pounds since August - he looks like a hoglet to me!

His cold is getting better and he's getting wilder and more fun each day. His new favorite trick when he's sitting in his chair is to reach out as far as he can, grab on to whatever he can get and pull, this is made much more fun if it means that he's getting closer to the computer or better yet pulling on your clothes and 'following' you around the kitchen. I noticed today while he was riding in the basket at HyVee that he no longer sits still either, he was patting his hands on the handle, bopping his feet around and generally just being wiggly, all pleasant things to see.

We didn't go to Omaha for our clinic visit today because of the weather, and sure enough a little boy is settled in his bed and the freezing rain is laying it's icy fingers across our world, sure is nice to be snug and safe at home.

Get Daddy, Tree, Get Daddy

We've had rather a quiet day around here. John's cold is still raging, but he's not meeting any of the criteria for taking him to the hospital: 1. febrile, 2. dehydrated, 3. not breathing well, and so we continue to stay home and wipe snot. The weather here is cold, in the 20's and there is a fine film of ice on everything, including the church parking lot of the in town congregation so confirmation and church were called off there for this evening and tomorrow morning leaving us with a full day to hang out together and maybe get the Christmas tree up.

Our Christmas tree is pretty enormous, it was bought pre-child and when we lived in a much larger house, and so it takes quite a bit to put it up. John was sitting in the floor enjoying helping daddy with branches and I was in the kitchen cooking supper when I heard John start screaming and crying like he was frightened and hurt all at the same time. Since Mark wasn't saying anything, there had been no big thuds, and there was no fussing or hollering coming out of the living room I didn't figure too much was up but when I came around the corner to see what was wrong Mark was under the tree, just his feet and legs sticking out working on lights and John was sitting on the floor frantically signing 'get daddy, get daddy, tree, get daddy'. I couldn't help but laugh as I picked him up and held him, and started to reassure him that daddy was fine, but of course he was not having any of it until dad was spit out by the killer tree and came to talk to him and console him too.

Until today Christmas trees has been one of John's all time favorite things, each morning he asks to go and see the Christmas tree, the one that the neighbors have lit in their front yard. I'm hoping tomorrow he will be happy to see that ours is all together. Maybe making and hanging some ornaments on it will help, but surely we won't be having Mark crawl under it and hide :)

Big Helper

John loves to help. Lol, that expression on his face is determination that he get them in, it was quickly followed by a huge smile that I missed with the camera of course. John's every morning job is putting away the silverware, and the measuring spoons and cups. Some mornings, like today, he does a very fast job, and other mornings we are treated to lots of banging and giggling. Thankfully he has realized that he didn't need to lick every spoon before it was put away - good boy!

John's other job that he loves to help with is pushing the laundry baskets down the basement stairs. He does this in his gait trainer, and since the first time that he watched the baskets go bumping down the stairs and flipping over at the bottom he's not quite so eager to run right up to the lip of the stair. Will this work to keep him from running down the stairwell if the door is ever accidentally left open again, who knows, but for now at least he loves helping, and what mommy could ask for more.

Bad Advice Column?

Okay, this is a rant about Lutheran stuff, there is no news of anything to do with John or us really in here, I just came across this article and it's irritating me. So, if you're not interested in LCMS stuff, just skip this one and I'll get to a cute piglet picture tomorrow.

I will admit up front that I'm not a huge fan of the LCMS, don't get me wrong, I'm not talking about a 'church' body but a bureaucracy that has run amok. I'm also not a big fan of the 'official' paper of the LCMS, the Lutheran Witness, but there are times when an article or two, or a letter in the front is sufficiently interesting enough to make me page through most of the issue.

This time as I was paging through I came across the headline with the Family Counselor column. I don't usually read this column in particular as I find it is generally remiss in dealing with spiritual issues in a spiritual rather than psycho-babble way. This time though the headline was "Dealing with a complicated medical history" and since that is largely where we live as a family I wanted to see what was said.

Now the letter itself is rather heart-breaking, and makes me wish that I could sit and console this woman with God's Word, make her a pie and volunteer to do a few jobs to give her husband a bit of a break. The answer to this letter makes me angry.

John has a complicated medical history and we have faced questions of surgery/not-surgery before and that is not easy as a parent, and it certainly can't be easy to make that decision for yourself either. But the counselor who answered this woman's question first congratulates her on talking of death when so many others can't, well how patronizing is that. Then goes on to exhort her to educate herself, get a second opinion, and get her husband and maybe even herself some help from the social worker and hospital chaplain, this is downright insulting. Anyone with a long term complicated medical history has more of a medical education than most normal people would believe. Finally the counselor suggests that she might talk to her pastor, well duh, that would have been number one. Lastly she throws a little Jesus at the problem, with a verse which while true, comes across as trite and slightly less spiritual than a WWJD backpack or a Faith Aflame tote bag.

I have sat in the hospital with many people who go through hell on earth because of the brokenness of creation, the advice given to this woman is not only reprehensible but I hope and pray that she somehow misses the issue and gets some real help from a faithful pastor. In my experience a social worker can do great things for you in navigating red tape and a generically protestant hospital chaplain is about as useful as a generically protestant self-help book, more full of platitudes and theology of glory than a Purpose Driven manual. On the other hand even a brief visit from a faithful pastor can give you the strength to carry on and make decisions, no matter how hard, in ways that bring peace to troubled minds and rest to hurting souls.

My other hope and prayer in this is that this particular issue of the Lutheran Witness is not found in hospital waiting rooms or at the bedside of struggling believers because no matter what good the rest of the magazine might do someone, this article is sure to destroy any good that was done.

A Million Little Things

Well, okay, maybe not a million, but since it's been forever since I've updated this there are quite a few. I'll try to put titles in here so you can skip the stuff you'd rather not know :)

About John

John's clinic appointment in Omaha went great! He was 27 pounds 7 ounces and has grown a little taller too, putting him right at 34 inches, finally for real this time. His labs all looked good and they cut his TPN from 14 hours to 12. He cried when we told him that he had to go to the hospital, but then when we pulled up at Charity's, our friends outside Omaha, he did the happy dance and was all excited. Getting to stay with friends actually made the trip more like a mini-vacation than a clinic visit and that we got to see the Sipes, wow their kids are growing, and meet with some other Looper families was a bonus that made up for John having to go into clinic where he cried because they made him go in a room. I've not yet told him that he is headed back there again on Monday, I think we'll tell him when it's time to go. Besides, he'll love knowing that we are headed back to the Baker B&B. You can see a picture of John with the Baker gang here!

At home John has been doing great. As you can see he loves the new computer desk...



...little stinker, so far he's not done anything to the computer that I've not been able to undo, but we'll see how long that lasts. He has gotten sneakier, and now when he hears us coming into the room, or sees that my attention is no longer being held by what I'm doing at the sink he pops around the end of the bar and gives me this look...



...yep, he has innocent down pat!

John's other news is that we had him reevaluated for speech therapy. Amy, John's therapist is wonderful, she is much more in tune to the needs of the child, instead of just foisting the philosophy of the school upon them. We knew that we could trust her with our most important question - Does John need to continue with speech therapy, or would he be better off going fully into sign and stopping speech altogether? If you know nothing of the issues of being deaf there are two basic camps, the deaf is a blessing camp who is offended by any hearing aid/implant to use the child's residual hearing or any attempt at oral communication. The other camp is the oral camp and they are pro hearing aid/implants and almost exclusively strongly anti-sign. Because Mark and I are both hearing parents the oral camp sure seemed like where we would like to live, after all John being able to talk as opposed to sign would just make things much more normal, but alas we have come to realize over the past year that this wasn't going to work. Now Amy did some testing for us on Monday, John is so smart, he has had no official intervention, ie therapy, in months and he has not only not gone backwards he's still progressing forwards in his language development. On the tests there are things that he should have been able to do at 2 that he still doesn't quite get and stuff that he's not supposed to be able to do until he's 5 that he breezes right through. That is one of the things that makes determining what is best in a school model very hard for him because he rarely fits in any of the normal models - but then I don't think many kids do, but that's another topic. Anyway, the answer to the question is, stop speech entirely and dive into sign with both feet to give John the best language education that he can get. Will he ever talk verbally, no one knows of course, but for now sign is the way of life. Mark and I have talked about this day coming, thought of it and such, but finally the day is here and there are no other roads, so we are traveling down the middle somewhere between the two camps of the deaf world. John will be taught sign, mom and dad will be learning it, and yet he will still have his hearing aids and we will still verbally talk to him too. Why shut a door that doesn't have to be closed?

Well never mind the titles I'll get to the other crazy stuff that's been going through my head in another blog update, John is waking up, the pizza must be put in the oven and the two of us dressed for church. Tonight is the first Advent midweek service and I'm excited that we are getting to go.

Black Friday Shopping

It's been a tradition in my family for several years to go Black Friday shopping, not just for the deals but for the fun of being out in the crowds and well somehow the excitement of shopping that morning is like the excitement others get at auctions and such. Normally I go with my mom, when she is here, or by myself and talk to her and my sister on the phone in Montana, so we are always doing this together. Aside from enjoying the Montana contingent of Black Friday shopping today, having Mark along, and our friends and their daughter there was also this little cutie that tagged along...



...and did great! He was a little dismayed when we woke him up at 2:30am and made him wear both a jacket and a coat, it was 22 degrees, so that we could drive the hour into Columbia, have breakfast and still make it to Walmart a good half hour before the doors opened at 5am. He stayed awake all the way into town and then enjoyed the shopping and only really started petering out on us when we got into the fabric store. Charming as ever he rode around with the fabric, but when it was time to go home he was pooped and ready to go. After some significant nappage he's up and ready to go again, but this time I think we'll just hang out at home, eat some leftovers and play.



As you can tell he's no worse for the wear and still having a Happy Thanksgiving!

Happy Thanksgiving!

The homemade cornbread stuffing is in the process of being made, the fresh vegetable broth is cooking down for brining the turkey in the morning and Mark is working away on homemade pie crusts for a nice spicy Pumpkin Pie and our version of Omi's gooey crumbly apple pie, the house smells like Thanksgiving and is reminding me of celebrating Thanksgiving with family when I was a kid. As a pastor's family we are miles and miles away from our families and find ourselves celebrating with a new kind of family, one comprised of friends, fellow Christians, and strangers, a different kind of celebration, but one in which we are very thankful to be in.

First and foremost I am thankful for forgiveness of my sins, faith and salvation given to me freely from Jesus Christ my Savior. I'm thankful that this same faith is shared by my family and loved ones. I'm thankful that those members of family that I miss most often, my dad, Mark's mom, my Uncle Fred, my Grandma, and Mark's best-friend Troy all shared that same faith and that this Thanksgiving they celebrate with Christ in person!

I am thankful for my family that is here and miles and miles away. For a loving husband who puts up with my craziness and continues to love me more each day, for our precious little boy who is so wonderful and for whom we are so thankful to have at home, for my family in Montana, Louisiana and Arkansas and various other states and Mark's family in North Carolina and Oklahoma who we get to enjoy in person from time to time and on the phone and email whenever we get the chance. For friends that have become so close that they are like family, the Sipes who are in transit to Wyoming and the Jacksons who live a couple hours north of us.

I am thankful for the friends and fellow Christians that we have, those in Mark's congregations who make serving Christ in this place a joy, and those that we've met through John's hospitalizations and those Loopers who have touched our lives in wonderful ways that we never dreamed of, especially the Bakers and Middendorfs.

I am thankful that I live in this country, the greatest country on earth ever, where I can worship without fear, where I can freely voice my opinion, where I can travel freely to go and see my friends and family and where I can enjoy my 2nd amendment rights to the nth degree or the extent of a paycheck at least :)

I could go on for hours and pages, I tend to be an optimistic person anyway and when it comes to listing those things that I'm thankful for there is no end, because there is no end of the blessings which Christ has showered upon us. I mention one more before the last, that I am thankful that this Thanksgiving we get to celebrate with Tiffany, our friends daughter, who despite some trials and setbacks in her young life is back on the path of success and taking one step after another to insure that she has the bright and wonderful future that we've all known she could have, and have prayed that she will live.

Finally I am thankful for this venue to share John's life and ours, to vent, to opine, to get on my soapboxes and to get out some of the talk, talk, talk that I'm wired to do.

Freedom of Choice?

While I was in town today picking up medical supplies for John, medicine for John and getting toner cartridges refilled for the churches I stopped by a little store that is snuggled below street level to buy a product that can't be labeled and although not quite illegal is certainly a hush-hush kinda thing. What was I after, in a country that would legally let me murder an unborn child even just for unproven research or smoke pot for medicinal purposes it is raw milk that I was after today. We had a cow when I was a kid, I miss her, no matter how hard I try to convince Mark he says that I can't get away with putting a miniature milk cow in the back yard with a big dog collar on and a glaring "Beware of Vicious Dog" sign, so I've been searching for where to get this beverage of my choice. In my own town I can buy soda laden with high fructose corn syrup, liquor of many varieties, cheap beer and milk from cows that have been given questionable hormones and antibiotics, not to mention juices from orchards that use who-knows-what kind of pesticides and yet it is the simplest beverage of all - milk straight from the cow, that I am willing to drive an hour one way to procur. I find it ironic that Freedom of Choice involves so many other things in our world and yet something so simple as what kind of milk we want to drink is regulated to the hilt. Now lest you think I'm crazy there is all kind of research that says that raw milk is better for you than pasteurized homogenized milk, and that raw milk from grass-fed cows is better yet. Over the weekend I'll put up a side-bar on the blog with all these things I've been reading of late. For now, I'm off my milky soapbox and getting ready for Thanksgiving. I have so much to be thankful for, I'll share some of those in the next post, and at the moment I'm thankful that I was able to procure some delicious organic grass-fed raw milk in nice recyclable glass jars!

Happy Dance!

When the news came that we were going home I was excited, Mark was excited and John well, John was interested, but when he heard that daddy was coming he was excited too!

It took a while to pack and load all the things that we had accumulated/brought to Omaha. As you can see in the picture when it came time to load John was ready to help, he grabbed the cart thingy and was dragging it through the room, well past the first load of stuff that needed to go on it. When the 2 carts were full, he was so good to follow us down the hall and get on the elevator and then while we were trying to figure out how to put all this stuff in the Jeep he ran around in his gait trainer, never straying onto the driveway or running into anyone, he was definitely a big helper.

Finally all was in readiness, the inside of the Jeep was so full that to get John out later on the road we had to unpack the side of the back seat and even had to set things on the ground. There were suitcases and the bicycle stroller on the roof and on the rack on the back that Mark got for carrying home dead deer there was a pile of stuff that came half way up the Jeep's rear window. We must have looked crazy traveling down the road but the most important part was that we were going HOME! We were only there for 76 days, there are people who live in the Lied center for years hoping that the day will come when they will get to go home, so most of all we just felt blessed to actually be taking our little guy home.

I was a bit worried that John wouldn't remember home. He slept for a good bit of the drive and was sound asleep when we pulled into Slater, but when we pulled in the driveway he woke up, took one look at the house, did his happy dance that is usually reserved for McD's or school and told us 'feed dog' and 'in' and was so excited to be here. Lucy was happy to see him too, and they spent a few minutes snuffling and petting and then it was time to get a little boy in bed. Even though we got home about 3am we had to take one more picture of John in his own bed before actually going to sleep.



John slept for a couple hours and then woke up and needed to be changed, cuddled and talked to a bit and then went right back to bed and slept for several more hours. Unlike our Lied room, John's room has doors that close and is completely dark, but it didn't take him long to readjust to home life and he is now sleeping in his own bed again.



Our friends, Becky and Elmer, came to see us this weekend. John was thrilled to see them too and spent the weekend showing them just how big and strong and silly he has grown. This morning Becky was making the Mickey kiss John's cheeks and then he reached out and bit his nose and sat there wagging Mickey around by the nose, we were laughing so hard we almost missed the picture. Of course if you're going to bite a mouses nose...



...you should bite his tail as well.

It was great to have our friends down to visit and we look forward to their return for Thanksgiving, this time with their daughter Tiffany, John will certainly enjoy all the bubbles!

It was also wonderful to attend our own church for Saturday evening communion services, there is nothing that says home like hearing the Word preached by Mark, sung with Judy playing and tasted too. John did pretty well in church, sat in Becky's lap and Tide-sticked himself for a while, and is now loud enough when he gets to talking that he really needs a husher.

We are still settling in, not too long before we left for Omaha our basement flooded and we did a whole house musical rooms, moving Mark's study from the basement to our bedroom, our room to John's, John's room to my sewing room, my sewing room to the living room and my computer to our new room. In the middle of this John and I left and poor Mark was left home with the chaos and the wife who called on the phone and said things like, 'oh thank you for moving that table, now I've changed my mind and don't want it there anymore.' He was always nice on the phone and as there are no new dents in anything around here I'm suspecting that he didn't throw the phone after I got off either. Good husband! So now he has succeeded in making us an entertainment center out of three bookshelves, a computer desk out of one bookshelf and rearranging closets and house and all of it with just a bit of my help when we got home. Of course John has enough energy that in the middle of all this he pulled each and everything he could reach down and giggled when it spilled across the floor, oh and then ran through the contents of whatever it was.

So if there is some kind of blogger award for the husband who has put up with the most craziness and still remains as sane as ever, nice to his family and sweet too I'm nominating Mark for it!

Day 76: WE ARE GOING HOME! TODAY!!!!!

This is Quintin, John is giving him a ride on his gait trainer, just a few seconds before Quintin was pulling John down the hall. They are so cute together and as glad as we are to go home I think John is going to miss Quintin.

There have been so many blessings brought about here. First and foremost is John's health. We are thankful to God that He has given such amazing talent to these people and that they are so close to our home. Then, well then there are the new friends, they have kept me sane and I'm so thankful for them, but at the moment I have got to PACK while the piglet is sleeping.

Thank you so much for everyone's prayers and I'll update again when we get HOME!

Day 75: Focus Power!

I have none. Ever since the word 'home' was spoken in clinic last week I have been unable to focus on anything. I can't really even focus on home, inside my head I'm just bouncing around from this to that and nothing and well, anyway, clinic is in the morning and then I'll either know that we get to go home and be way too excited to focus on anything at all, or that we aren't going home and be just too bummed to focus, so I'm thinking focus power isn't going to be acquired for a while.

During my befuddlement John has been doing FANTASTIC! His labs today were great and he's been a wild child running here and there and giggling and carrying on and just being a fun wild little boy.

Tonight John and I had a special treat. We went out to dinner with some of the Looper mommies that we've met online, and got to laugh and enjoy the evening together. John just loved it and had a great time playing with Charity and even got a few pictures taken, Charity should have them up on her blog, Lutheran Hen pretty soon. It was nice to put faces to some of the names that we've met on line and it sure was a wonderful distraction. We are looking forward to getting to enjoy these ladies company again!

Day 72: RUN d a w d le RUN d a w d l e

Today John was excited to walk, and run, and then he would dawdle, and people would stop to encourage him to walk further and he would of course be looking at them and then at me like they were crazy. Silly kid, despite the snotty nose he did get to run and play a good bit of today and this evening went to visit Dalton, a little boy who is in the PICU whose mom visits with us during meals at the cafeteria often. John was a bit intimidated by the PICU but was handling it well right up until the nurse with the yellow gown and mask came his direction, then he started crying and looking for a way out.

I'm excited to see his energy level picking up. He's up at 8am now, he still needs a 3 hour nap at about 1, but then has the energy to run and play all evening. This is new, since surgery he's really only had the energy to run and play a bit before lunch and not much at all afterwards. I'm excited to see how his energy level picks up as the days go on. The other exciting part is that he's doing this on less and less TPN and more and more g-tube feeds. Prior to surgery John was down to the point where he could only tolerate 10ml/hr of 16 calorie formula, this is less than he could handle at about 18 months old. Now he's up to 47 ml/hr of 20 calorie formula and will go up another ml tomorrow. The more he can do with his gut the better off his liver is and the closer he is to getting rid of that central line.

We continue to be thankful for your prayers, love and support. We are constantly reminded here how precious life is, and pray for the backpack boys and the cancer patients and all the families and hospital staff that surround us that they will be strengthened in their faith, or come to faith in Christ, and truly know just how precious life is.

Day 71: Little Miracles

I find that in life it is not so much the big, mountain top, take your breath away miracles that keep you going from day to day, but the little blessings, those things that work out just right when you need them too, even when you expect the worst. I went to bed last night worried that we wouldn't find John's hearing aid, hoping that if someone found it they would turn it in. I woke up this morning and searched our room again, went to all the places that we had been and checked every conceivable place that someone would turn in a little red and silver hearing aid. By the time lunch rolled around and still no hearing aid I figured it was gone for good and we would have to go through the process of getting it replaced.

John's favorite backpack boy was at the Diagnostic Center when we went for labs, so he got to play with Quintin and I got to visit with his mom, this was a really nice break as we weren't able to go visit with the Lutheran Hen and her Chicks today because John woke up all snot nosed and icky feeling. When we all went to lunch and I picked John up out of his gait trainer I found his hearing aid, it was hanging on one of the straps on the gait trainer and had been with us the whole time that I was frantically searching for it.

Option Care, John's home health company, called during lunch to tell me that his new g-button was in, the tube that he's been putting up with hurts and pulls on him, so this was fantastic news. His labs look good and at home Mark found an index for the Bull's Notes that I was supposed to start indexing for him tonight. John has had a great day, he's needed more sleep and rest than usual but in the middle he's also had more energy and ran and played more than he's done recently too. Oh, and it looks like if he continues to improve we will get to go to church again this Sunday, we haven't been since before surgery and we miss it.

Despite John waking up with a snotty nose and puking snot this morning the day was full of little blessings and now the best little blessing of all is falling asleep in his bed, so far without puking his night time meds!

Day 70: Going Home?

At clinic we asked Dr. Sudan what the criteria was for John to go home. She told us that if he can make it through the week without any incidences that next week we can talk about going home and just coming up for clinics every other week. We're excited! The other news from clinic, John has gained almost another pound, he's up to 26 pounds 10 ounces, and he's grown a half centimeter since last week too. His labs are looking great and both his liver and his kidneys are hanging in there. His TPN was turned down from 20 hours to 16 and he's continuing to advance on his g-tube feeds. His JP Wound Drain was taken out and he is feeling better and less ouchy every day. John's blood pressure is not coming back down to normal, will it, only time will tell, but Mark and I are wondering if he would have had a blood pressure problem earlier if he hadn't been so malnourished that his heart rate was down to barely over half of what it should have been.

We had a great visit with Mark. John was so excited to see him that he ran across the last few feet of the distance between them with his hands held up for a hug and squealing 'daddy' clear enough that dad certainly heard his name. John got to show dad his cool magic trick, where he pulls a napkin out of his sleeve after showing you that he doesn't have anything in his hands. He learned to sword fight with plastic knives, and loved getting 'stabbed' so much that if Mark didn't 'stab' him often enough John would 'stab' himself and then clutch his 'wound' and giggle.

Mark is on the way back home now. I must say that as a wife it is certainly hard to say good-bye to the other half of my heart and watch him drive away, but hardest of all is being mom watching a little boy hug and kiss and wave and blow kisses and then miss his daddy. Every so often I see him just thinking and staring and then he will tell me 'daddy working'. Believe me, I am praying that this week passes with no incidences and a little boy gets to go home and see his daddy every day.

Of course before we could finish out the evening one of John's hearing aids is missing, good grief, but at least this incident isn't one that would keep us from going home.

So after all this blabbing I have pictures to share. The first is of John and dad.



This picture is of John with his pumpkin, a gift from one of the cafeteria ladies. Most days John and I eat in the cafeteria 3x a day, so we are very attached to the nice cafeteria ladies and they are quite attached to John as well.



And these are of John receiving a very sweet present and a nice letter from Dr. Rashmi, of Columbia Children's. She sent him a back-up Tiger in case his first one goes missing again and a lovely letter.







It is thanks to the expertise of Dr. Rashmi and the other doctors and staff at Columbia Children's that we are here, and thanks to them that we could get to come home before John's central line comes out. Each day we thank God for these wonderful people.

Day 65: Irrepressible Smiles

John woke up this morning with irrepressible smiles and most of the day was full of smiles and giggles.

Here's the promised tattoo picture...



...of course he was much more interested in us going and then when I told him that Spider Man was on his shirt he was all excited, at least for a few minutes, but then he wanted to GO! One of the young guys that works in the cafeteria was dressed as Spider Man for Halloween and came out of the kitchen to let John see him. John was all wide eyed then, but this morning he was pretty excited.

When we went to have blood drawn this morning he was such a good boy, the lady that drew his blood was so impressed and then on our way out of the Diagnostic Center we ran into another one of the 'backpack boys' Quintin and his mom Aaron. We went to the cafeteria with them for lunch and John was wild, laughing and giggling and excited and even took a couple bites of food, one Cheerio, showing off how he could 'drink' them out of the box, and one bite of spaghetti from Aaron. Quintin though John was pretty funny too and so we are probably going to be meeting them for lunch again tomorrow.

The weather was beautiful and so we took a nice long walk outside, phew, we both needed that shot of sunshine.

After John's nap he again woke up with irrepressible smiles and giggles and while I was turned around working at the sink he was squealing with delight and when I turned back around I saw the reason, he was holding his cup and watering himself, he was obviously ready for another water 'fight' with the Chicks.

He finished up the evening by entertaining the cafeteria and then finally by giggling and laughing while daddy was on the phone with us.

The wound drain is slowing down again, and it's clear again, John's labs were fantastic and I was able to turn his g-tube feeds up to 40. Mark is coming on Sunday evening, the new caster/wheels arrived today and so he is coming with wheels and shoes and hopefully within a couple days John will be running the hospital hallways again.

Day 64: Shock to Shenanigans

The shock was for me. In a discussion about John's JP-drain, wound drain, continuing to drain the nurse coordinator used the words 'end stage liver disease'. So we talked about how John's liver cirrhosis is serious, but if he gets off tpn and remains healthy he could do fine. Regardless, just using the words 'end stage liver disease' was still quite shocking. We know that John's health is fragile, we've known this since day one, it's just that there are moments in time when reality slaps us in the face. These are the times that we continue to remind ourselves that John is in Christ's hands, and that His will is perfect, breath deep and keep going.

Despite the shock of the words today John is doing very well. I'm a little concerned that his JP-drain is pink again, but hopefully that will settle down overnight and tomorrow's labs will show that all is still going well. I was able to turn his tube feeds up to 35ml/hr tonight and he was able to take the first bit of his evening meds and not throw up. Here's hoping that the second half goes as well.

The shenanigans, well those came with the Lutheran Hen's family. Charity and the chicks came into town to hang out with us and to go to the library together today.

The kids and adults had a great time. John loved having the Chicks push him around the library in his stroller. I think he got to enjoy more wheelies today that all the wheelies he's ever enjoyed before. And the Chicks, well they sure seemed to enjoy pushing that silly boy around.

Later back at our Lied room the fun continued...





...one of the things in John's Halloween booty was a teeny tiny water gun, well one water gun and 5 children is just begging for sillyness, so with some saline syringes as additional water guns the fun was on. John giggled and carried on and enjoyed being shot just as much, or maybe even more than shooting. By the time the water fight was over everyone one was at least a little wet, John and Chick#4 were both pretty darn wet and smiles were irrepressible. John enjoyed that the girls would give him drinks out of their syringes as well as shoot him, what a silly boy. John got his first tattoos today too, I've promised his dad that I would take pictures so I will post those tomorrow. Even when he was going to bed he was telling me that he had a pumpkin on his knee.

God always brings blessings from hardship, and the Lutheran Hen and her family is certainly a blessing that we are very thankful for!

Day 63: Arrgh the Booty!

The hospital goes all out for the kids for Halloween, we've never been in the hospital for Halloween before so we didn't know what to expect. John was amazed at all the costumes, especially the teenage boys dressed as Tweety and Sylvester and only a little scared of the grandma wearing the Scream costume. What possessed the grandma to wear the Scream mask and costume I'll never know, but I was able to tell John it was a costume, just pretend like the other ones and he was able to go on. After the first person put something in his bag I told him to say 'thank-you', after that he was all smiles and 'thank-you, thank-you' often before we even got to the next person. As you can see from the pile that he is laying in there were lots of thank-you's to share and this pile is after we started putting together bags for the Hen's kids that are coming tomorrow. Do I regret not dressing John up, well no, not really, he would have probably been on the nightly news then, but well, he's always in bed before that anyway, besides he had a great time and now he has some things to share with others too, and I think he'll like that just as much.

Day 62: Happy Reformation!

If you're looking for John's clinic appt info for the day, scroll down, it's in the next post down.

Yes, I know Reformation Day is actually tomorrow and most everyone celebrated it this past Sunday, but for me I like today, as today is also the anniversary of my confirmation and it and Reformation Day just belong together, and if the churches can just willy nilly move it, I think I get to too.

I spent some time trying to explain to John that when we celebrated Reformation we were celebrating the revealing of Jesus, that the church had covered him with useless traditions, indulgences and such and that what Martin Luther did was take away these things that hid our Lord from us. I've run into lots of people over my years as a Lutheran who believe that our liturgy, the pastor's vestments, and old hymns are more of these useless traditions that hide Jesus from seekers and young people. I've never understood this, we aren't requiring praying to saints, we're not seeking money for elevation out of purgatory and we surely aren't conducting the worship service in a language foreign to the people.

For me coming to the Lutheran church was a life saver. Ever since I 'asked Jesus into my heart' as a child in the Baptist church I worried and wondered, fretted and despaired that I hadn't done it right, that I didn't really mean it or that maybe I only meant it then but didn't mean it today. As a teenager I was tempted by all the things that other teens are tempted by and surely if Jesus came and lived in my heart I wouldn't be tempted to do these things. I went forward at nearly every altar call hoping, praying that someone could assure me that I was really a Christian. To this day I cringe every time we sing 'Just as I Am', not because it's a bad hymn, but because it brings back bad memories of fear and despair.

As time went on I was confused by the insistence that the wine that Jesus made at Cana was really grape juice and since that wasn't really true I was able to start discounting a lot of the rest of the scriptures also. It started with Creation, that's a hard one to swallow and so it, like the wine, must not really be what it said, and then of course Virgin Birth, resurrection and so on and so forth until I came to the point in my life that I was pretty sure that Jesus was really only the Savior of Christians and all gods were pretty equal and equally useless.

The first rescue from this disastrous line of thinking was the death of my dad. It's hard to think of something so heartbreaking as a lifeline, but it was, because I hurt and I missed him so very much that I had to figure out where he went. Evidence in my dad's life pointed to Christ and to heaven as his home, that started me thinking that maybe I should give this religion thing another try, after all the things that I was doing wasn't making me happy and in fact I was spiraling into depression. So I called my sister and asked if I could attend church with her for the month of September 1994. I was sure that I needed to go for a whole month to give it a chance, and then if that didn't work I would move on and try other Christian denominations until I found one that could fill the hole that alcohol, smoking and trashy friends weren't being able to fill.

My sister attended Our Savior Lutheran Church in Stevensville, Mt and that is where I headed that Sunday morning in September. I was shocked that the walls didn't fall in or the roof crumble on my head, surely if God knew all the things that I had done the pew that I chose to sit in would turn into an ejection seat and I'd soon find myself flying back out to the parking lot. Instead I found peace. I spent most of the first service just sitting listening in shock. I had never heard the liturgy before and I was amazed, I was in awe, all these people were speaking Words that I knew were from the Bible, Words that spoke of Christ. Most of them spoke the liturgy without the book in their hands and I was so amazed that these Words were a part of them, I wanted them to be part of me too. The hymns sang about Christ too, not about me, but about Christ and what He had done. I was eager to return the next week.

The next week was just as wonderful and this time I actually found that I could follow along in the hymnal a bit. I really liked that the service was the same, it made it timeless, like I had never left last week, and gave me more time to absorb those wonderful Words that these people knew and lived. I wasn't offended or put off by the old hymns, the Thee's and Thou's or any of the liturgy, on the contrary it had a majesty, a holiness, somehow when it was going on and the people were speaking and singing, it was like being in a different place, like being in heaven maybe, maybe better than any being in heaven had ever been described to me before.

Soon the pastor preached a sermon in which he said that if any part of you, even the smallest part desired to be with Christ and to be good, then you already were a Christian. I was shocked. All this time, since way before I had 'asked Jesus into my heart', way before I was baptized I had wanted to be a Christian and be good to others, I had been a Christian all along. He went on to talk about faith not depending on us, that it depended on Christ and His work. Another shock, you mean it didn't depend on me trying to be good, it didn't depend on me chasing out my own doubts, somehow that made being good and believing even easier to do, it didn't make sense but for the first time in a long, long time I was starting to feel hopeful. But still there was that nagging feeling, if only they knew the things that I had done they wouldn't be sitting in church singing and speaking of Christ, they'd be marching me to the parking lot and helping me on my way.

The very next week the pastor preached a sermon on forgiveness, he told me, surely he was just talking to me, that God knew my sin, even those sins that were so awful that I could barely even manage to admit them to myself, God knew and Jesus died to pay for them and they were all forgiven, every last one, even the ones that I couldn't speak out loud. That wasn't the first time that I sat in church and cried, and it certainly wasn't the last, but it was the first time since I was a little kid that I felt free, felt that even I could be loved by God, indeed was loved by God. I needed to be here, I needed to be surrounded by this wonderful liturgy and hear these words all the time, why exactly didn't we have church every day.

The pastor wasn't much on catechesis and poor Mark has had to fill in a lot of blanks since then, but I was confirmed on that Reformation Sunday, the 30th of October, 1994. All of this was just in the nick of time, of course in God's perfect time, because it was then that our church, yes - my church, had a vicar, the vicar that I fell in love with and the vicar that is now the pastor that I love to this day. Without this beautiful liturgy and these Words of Christ spoken through a pastor, well I don't even like to think about where I would have ended up or the wonderful things in life that I would have missed out on.

I still run into people that find the liturgy and old hymns of the church too restrictive. I love the TLH, I love those hymns and yes some of the hymns out of the newer hymnals too, they give me freedom, the freedom to live each day without fear of the sins of the past and with the love and desire to take care of the people, the neighbors that are here now. I was thinking about this last night and to me the closest comparison to the freedom given by the liturgy and real hymns is the freedom given to John by his specialized chair. This chair is rather restrictive and keeps the trunk of his body stable so that he can concentrate on moving his arms and head and mouth and such. This is what the restriction of the liturgy does for me, it holds me up and supports my weak faith so that I can spend my energy battling my sinful nature and taking care of my family and my neighbor. I am too weak of a Christian to indulge in the fads and trends of contemporary worship. I constantly need the Words of Absolution spoken in my ears to remind me that I am forgiven, and as often as possible I need, I crave the forgiveness given in the Lord's Supper. I often think that Jesus had me in mind when He instituted this, knowing that I'm so stubborn and slow to believe He made His forgiveness so real that I could touch it, smell it and taste it and offers it over and over lest I forget and slide back into the despair of unbelief.

Honestly this is what I miss the most about home, I certainly miss being with Mark all the time, being in our house and having our church family around, but when it comes right down to it the thing that I miss the most is standing amongst my church family singing the liturgy and hymns, being fed forgiveness in all its wonderful forms and knowing that for that little while my feet may be on earth, the rest of me, the rest of me is somewhere else, somewhere in the very presence of Christ with these who have become my friends and family, and those of my family who have gone there before me.

So Happy Reformation Day from me!

Day 62: Clinic Appt

John had his weekly clinic appointment this afternoon. He is now 25 pounds 11 ounces and looks great. His labs were good. His liver is holding in there, they did find that he already has some cirrhosis when they did the biopsy, but the liver enzymes are still reading normal even though his albumin levels are chronically low. The J-G tube that was scheduled for tomorrow was put on hold again, though not yet completely canceled. We are going to be giving him Gent orally to control the bacterial overgrowth for 48 hours, then start increasing feeds again. If he can tolerate increasing then it sounds like that option will be pretty much taken off the table next week. At one point last year John was up to 100 ml's per hour of g-tube feed over 10 hours at night and then 500 ml's of ceralyte over 2 1/2 hours in the afternoon and was doing pretty good until the bacterial overgrowth just got out of hand. So we have hopes that his stomach can handle the g-tube feeds and we can get him growing and gaining weight and doing well without the TPN. We did make a step forward on that note this week as his lipids are being discontinued. As always we are praying that God's will is done, but specifically this week we are praying that a little guy can continue to gain weight without the lipids and be able to advance his feeds appropriately.

Day 62: Happy Reformation Day

Yes, I know Reformation Day is actually tomorrow and most everyone celebrated it this past Sunday, but for me I like today, as today is also the anniversary of my confirmation and it and Reformation Day just belong together, and if the churches can just willy nilly move it, I think I get to too.

I spent some time trying to explain to John that when we celebrated Reformation we were celebrating the revealing of Jesus, that the church had covered him with useless traditions, indulgences and such and that what Martin Luther did was take away these things that hid our Lord from us. I've run into lots of people over my years as a Lutheran who believe that our liturgy, the pastor's vestments, and old hymns are more of these useless traditions that hide Jesus from seekers and young people. I've never understood this, we aren't requiring praying to saints, we're not seeking money for elevation out of purgatory and we surely aren't conducting the worship service in a language foreign to the people.

For me coming to the Lutheran church was a life saver. Ever since I 'asked Jesus into my heart' as a child in the Baptist church I worried and wondered, fretted and despaired that I hadn't done it right, that I didn't really mean it or that maybe I only meant it then but didn't mean it today. As a teenager I was tempted by all the things that other teens are tempted by and surely if Jesus came and lived in my heart I wouldn't be tempted to do these things. I went forward at nearly every altar call hoping, praying that someone could assure me that I was really a Christian. To this day I cringe every time we sing 'Just as I Am', not because it's a bad hymn, but because it brings back bad memories of fear and despair.

As time went on I was confused by the insistence that the wine that Jesus made at Cana was really grape juice and since that wasn't really true I was able to start discounting a lot of the rest of the scriptures also. It started with Creation, that's a hard one to swallow and so it, like the wine, must not really be what it said, and then of course Virgin Birth, resurrection and so on and so forth until I came to the point in my life that I was pretty sure that Jesus was really only the Savior of Christians and all gods were pretty equal and equally useless.

The first rescue from this disastrous line of thinking was the death of my dad. It's hard to think of something so heartbreaking as a lifeline, but it was, because I hurt and I missed him so very much that I had to figure out where he went. Evidence in my dad's life pointed to Christ and to heaven as his home, that started me thinking that maybe I should give this religion thing another try, after all the things that I was doing wasn't making me happy and in fact I was spiraling into depression. So I called my sister and asked if I could attend church with her for the month of September 1994. I was sure that I needed to go for a whole month to give it a chance, and then if that didn't work I would move on and try other Christian denominations until I found one that could fill the hole that alcohol, smoking and trashy friends weren't being able to fill.

My sister attended Our Savior Lutheran Church in Stevensville, Mt and that is where I headed that Sunday morning in September. I was shocked that the walls didn't fall in or the roof crumble on my head, surely if God knew all the things that I had done the pew that I chose to sit in would turn into an ejection seat and I'd soon find myself flying back out to the parking lot. Instead I found peace. I spent most of the first service just sitting listening in shock. I had never heard the liturgy before and I was amazed, I was in awe, all these people were speaking Words that I knew were from the Bible, Words that spoke of Christ. Most of them spoke the liturgy without the book in their hands and I was so amazed that these Words were a part of them, I wanted them to be part of me too. The hymns sang about Christ too, not about me, but about Christ and what He had done. I was eager to return the next week.

The next week was just as wonderful and this time I actually found that I could follow along in the hymnal a bit. I really liked that the service was the same, it made it timeless, like I had never left last week, and gave me more time to absorb those wonderful Words that these people knew and lived. I wasn't offended or put off by the old hymns, the Thee's and Thou's or any of the liturgy, on the contrary it had a majesty, a holiness, somehow when it was going on and the people were speaking and singing, it was like being in a different place, like being in heaven maybe, maybe better than any being in heaven had ever been described to me before.

Soon the pastor preached a sermon in which he said that if any part of you, even the smallest part desired to be with Christ and to be good, then you already were a Christian. I was shocked. All this time, since way before I had 'asked Jesus into my heart', way before I was baptized I had wanted to be a Christian and be good to others, I had been a Christian all along. He went on to talk about faith not depending on us, that it depended on Christ and His work. Another shock, you mean it didn't depend on me trying to be good, it didn't depend on me chasing out my own doubts, somehow that made being good and believing even easier to do, it didn't make sense but for the first time in a long, long time I was starting to feel hopeful. But still there was that nagging feeling, if only they knew the things that I had done they wouldn't be sitting in church singing and speaking of Christ, they'd be marching me to the parking lot and helping me on my way.

The very next week the pastor preached a sermon on forgiveness, he told me, surely he was just talking to me, that God knew my sin, even those sins that were so awful that I could barely even manage to admit them to myself, God knew and Jesus died to pay for them and they were all forgiven, every last one, even the ones that I couldn't speak out loud. That wasn't the first time that I sat in church and cried, and it certainly wasn't the last, but it was the first time since I was a little kid that I felt free, felt that even I could be loved by God, indeed was loved by God. I needed to be here, I needed to be surrounded by this wonderful liturgy and hear these words all the time, why exactly didn't we have church every day.

The pastor wasn't much on catechesis and poor Mark has had to fill in a lot of blanks since then, but I was confirmed on that Reformation Sunday, the 30th of September, 1994. All of this was just in the nick of time, of course in God's perfect time, because it was then that our church, yes - my church, had a vicar, the vicar that I fell in love with and the vicar that is now the pastor that I love to this day. Without this beautiful liturgy and these Words of Christ spoken through a pastor, well I don't even like to think about where I would have ended up or the wonderful things in life that I would have missed out on.

I still run into people that find the liturgy and old hymns of the church too restrictive. I love the TLH, I love those hymns and yes some of the hymns out of the newer hymnals too, they give me freedom, the freedom to live each day without fear of the sins of the past and with the love and desire to take care of the people, the neighbors that are here now. I was thinking about this last night and to me the closest comparison to the freedom given by the liturgy and real hymns is the freedom given to John by his specialized chair. This chair is rather restrictive and keeps the trunk of his body stable so that he can concentrate on moving his arms and head and mouth and such. This is what the restriction of the liturgy does for me, it holds me up and supports my weak faith so that I can spend my energy battling my sinful nature and taking care of my family and my neighbor. I am too weak of a Christian to indulge in the fads and trends of contemporary worship. I constantly need the Words of Absolution spoken in my ears to remind me that I am forgiven, and as often as possible I need, I crave the forgiveness given in the Lord's Supper. I often think that Jesus had me in mind when He instituted this, knowing that I'm so stubborn and slow to believe He made His forgiveness so real that I could touch it, smell it and taste it and offers it over and over lest I forget and slide back into the despair of unbelief.

Honestly this is what I miss the most about home, I certainly miss being with Mark all the time, being in our house and having our church family around, but when it comes right down to it the thing that I miss the most is standing amongst my church family singing the liturgy and hymns, being fed forgiveness in all its wonderful forms and knowing that for that little while my feet may be on earth, the rest of me, the rest of me is somewhere else, somewhere in the very presence of Christ with these who have become my friends and family, and those of my family who have gone there before me.

So Happy Reformation Day from me!

Day 61: Energy to Fidget

Never before have I seen John have the energy to fidget just to be fidgeting. Today he did, he spent a good two hours just bouncing his leg up and down on his stroller. It was quite entertaining, especially considering we were in the treatment center because John ran a bit of a fever this morning. It's virus snot stuff, he got his flu shot today though and of course had labs and cultures and stuff drawn and got looked over thoroughly, but for all the world it just looks like the kids got a pretty good cold going.

Today is also the first day that I had school planned out instead of just winging it and I was impressed with how much stuff he sat through and enjoyed. We started with singing "Lord Keep Us Steadfast In Your Word", then read the story of the Annunciation out of his kids Bible, read through the Ten Commandments and their meanings and had morning prayer, then we colored the apple picture which finished off all the activities for "A" and went on to "B". I was impressed that John just showed me the sign for "B" before I even asked and he was delighted to blow bubbles, have me blow cotton balls around on the table and blow on his pinwheel. He glued construction paper balloons to a construction paper sky and was even happy to go through the cards that I made him for shapes and colors. I think this evening we'll blow stuff again and maybe color the banana for "B" leaving only the cool butterfly project left before we go on to the "C's". For the butterfly he's going to get to sort beans and then glue them to a big butterfly, he is going to totally love this, but I'm waiting until Mark comes and brings me a muffin tin for him to sort with. I've been really impressed with how much John loves and wants to do school, it's one of the first things he asks for in the morning, so I figured I would take advantage of his enthusiasm and we would have school often.

While we were in the treatment center I had the TV on PBS and I was amazed at how much of it he was catching. It makes me think that maybe instead of trying to have him play with his toys in the evening that I'll turn PBS Kids on in the afternoon and have him play then. John isn't very good at playing by himself and so this is one of those things that we are trying to learn. He's better at it at home, but even there he'd much rather be entertained by one of us.

I haven't told him yet that dad is coming back this week, I'll probably do that later today or tomorrow. We finally had to order new casters for the gait trainer as John ran his through the mud puddles at home enough that he thoroughly rusted the inside of them and they have gotten to the point that no amount of cleaning will make them roll easily anymore. So new wheels are on the way to our house and dad, new wheels, tools and a whole list of other junk is headed this way as soon as the new wheels appear! I can't wait to see John zip up and down the hallways again, and neither can a whole bunch of other people around here. I keep having to explain that he's okay, the wheels are the issue, and the nice maintenance guys keep offering to take them apart and work on them again. All in all we couldn't have landed in a more friendly place.

Day 60: Reformation Sunday

We started out the morning with Mark calling us and singing A Mighty Fortress and ended with him calling and singing Lord Keep Us Steadfast in Your Word. The middle of the day, well it went. We did spend some time coloring a Jesus picture and talking about the Reformation, boy that's not an easy subject to talk to a 3yo with. I'm thankful that I've got many more opportunities to address this very important topic.

Day 59: Signs of Growth

The last few days have been filled with signs that John is growing. I had to remove the darts that I put in his pants, his diaper tapes don't cross, he's grown out of all but one pair of shoes and they are close and today I realized that his braces are too little - his newly chunky calves are just too big to be squeezed in there anymore - all of which leaves us cheering and smiling!

Since today is Saturday we took it easy and played and read books. He helped make his first paper chain and put more animal stickers on construction paper - this time I drew him a bit of a picture and had him look and place them on lines and such, he's getting better at this skill. I even read him the first few pages of Farmer Boy this evening and he was liking it, we might try that some more tomorrow.

John hadn't noticed that Tiger had gone missing until dinner time this evening and then, of course, he not only wanted Tiger but he wanted him now. I looked high and low around here and was about to call Mark to have him look in the Jeep when I thought to call Charity and see if our wayward Tiger was hanging out at her house. Sure enough that Tiger is there, phew, I told John that Tiger was at Miss Charity's and he cried, I told him it was okay that her oldest two were watching out for him and he would be okay and he was a little better, then I told him that Miss Charity would bring Tiger safely back next week and he was okay.

Tomorrow our congregations are celebrating Reformation Day, here I sit surrounded by pumpkins and fall decorations, all of which I'm grateful for, but I really miss the red of Reformation and so am off to find John something to color tomorrow so that we can talk about Reformation and what it means.

Day 58: Sillier by the Day

A respite and mental vacation, that's what we had as a family last night and we are so thankful to our friends Charity and Birk and their kids for welcoming us into their home and hearts. Charity is a great cook and she made us delicious lasagna, homemade yummy bread and great green beans and the company with dinner was fantastic. Mark enjoyed getting to meet the family and getting to talk to Birk about theology stuff. John was exited from the time that we told him that we were going, was being silly at the table, loved playing in the floor with the kids and cried when we told him that it was time to go home. Charity promising that she would bring the kids to come see him next week was the only thing that settled him down so that we could go. I always have a wonderful time and am looking forward to getting to visit again. Charity loaned us Before Five in a Row, a homeschool book and it really looks like something that is going to work for John, it's at least going to be fun trying it. She also sent yummy leftovers home with us and I sent them on home with Mark today, because I'm not going to be there to cook him yummy stuff and the cafeteria people are cooking for us.



Julie wrote and asked for a smile, so here's the biggest one of the day. He was cracking himself up so badly, because he was doing this...



...silly boy, he was so desperate to have his socks off, just to ask dad to put them back on again of course, that he was biting them and pulling with head and hands. Each day he has more energy and is more able and more silly.

This picture is for Ellie...



...John loves these. Tonight after his dad left he was so excited to get back up stairs so that we could please open the school box, so we glued apples on trees and had a great time. The activities that you've made for John are not only fun, you have accomplished something that me and all his therapists haven't been able to do, you made stuff that makes him want to look at what he's doing. John has always looked at something and then turned away and just done it, not these projects, these he is actually looking for the dots of glue to stick his apples and ant legs on and enjoying it. Oh, and the Ants Go Marching song, we have to sing that several times a day and most often at least once in the cafeteria.



John was enjoying daddy reading to him, but kept having to show him his school work too. We love these new Arch books that are written by Pastor Eric Rottman. The first one he signed and brought to John in the hospital in St. Louis and this one Mark picked up while he was at the pastors conference this past week. We'll definitely be on the look out for more of them.

Speaking of books Mark is taking our load of books back to the library for us. Some we have enjoyed much more than others, here's the list:

The Everything Book by Denise Fleming Wish we would have found this one a year or so ago.

Chicken Soup with Rice by Maurice Sendak This one is fun!

Let's Go Home, Little Bear by Martin Waddell I think we'll be reading lots more Little Bear books.

The Pig in the Pond by Marin Waddell This one hit the favorite list and we'll eventually have to buy it. It is laugh-out-loud funny, when Neligans pig jumps in the pond and splashes all the ducks and geese out we couldn't help but laugh.

Tikki Tikki Tembo by Arlene Mosel I like this one better than John does, but then it's because I get the fun of reading Tikki Tikki Tembo's long long name over and over. We'll be checking this one out again.

The Cake that Mack Ate by Rose Robart Too funny, of course then we've had dogs like Mack before! We'll definitely be seeing a lot of this one.

Millions of Cats by Wanda Gag Um, okay, well I'm sure we'll check it out again, but since we are avowed dog people it was good but well it's cats.

Good Job Little Bear by Martin Waddell Another fun Little Bear book.

Chewy Louie by Howie Schneider Another laugh-out-loud funny book, about another dog that I think we've owned before. When the dog ate the trainers guitar we knew we were hooked.

Do You Want to Be My Friend by Eric Carle Well, not my favorite of his books.

The Silver Pony by Lynd Ward A wordless book, when I read it I didn't really get it and when Mark read it he saw themes of redemption and such, figures :)

Cloudy With a Chance of Meatballs by Judi Barrett We'll have to try this one when John is a bit older, even I couldn't really get into it now, so I may have to be a bit older too.

The two books that Mark is returning to the Library for me are...

Real Food: What to Eat and Why by Nina Planck This is one that will most certainly be put in our home library and will change the way we cook, shop and eat!

Eat Fat Look Thin by Bruce Fife Diet books come and go, the diet industry in my not so very humble opinion is largely a rip-off and detrimental to the health of most people. All my life the more I've dieted the more weight I've gained. So this book struck a cord with me in that it talks about regaining health and that weight is just a symptom of an overall health issue. A good bit of what he talks about is impossible to implement in a have-to-eat-in-the-cafeteria setting but some of it is and it does seem to make me feel better.

Our list of books for Mark to pick up at the library for us next time is growing, growing, growing and we will get to go to the library here and check out a few this week too, that will be fun.

John's feeds are started back up, we still have the g-j-tube replacement tentatively scheduled, but now for Wednesday at 11am. So he has between now and then to prove that he doesn't need it. He's certainly acting like he's doing great, and getting bigger and stronger each day so we'll see. Basically he has to make it to clinic Tuesday afternoon without puking or exploding.

Day 56: Field Trip and Weight Gain

Today John got to see the back of the tray return in the cafeteria, he's been fascinated with this thing ever since we got here and today one of the kind cafeteria ladies arranged for him to get to watch the back of it, he was impressed. The same lady gave him a pumpkin this morning and so now he's been signing pumpkin over and over and he likes to hold it and knock on it. We'll probably carve it up for him tomorrow and let him see it with a face on it.

At clinic on Tuesday John weighed 24 pounds 13 ounces, that is officially the biggest he has ever been in his entire life and at 34 inches long it makes him right in the middle of the growth chart for height to weight, even though he is still under the curve for both individually.

The whole g-j-tube issue has been interesting and came to a head yesterday when the tube came out of it's own accord. It took us a while to get a g-tube in that won't leak and for now that's what's in there. He is tentatively scheduled to have a g-j-tube placed again on Friday but we're watching his stomach output and such to see if he is going to need it. In the end we want what's the very best for John and personally at this moment I'm just thankful that we are finally actively and aggressively addressing the skin breakdown around this thing because it was making me more nuts than usual. We'll probably know for sure tomorrow if they are going to place the g-j again or if we are okay with just the g-tube. I wouldn't be surprised to see them run another upper gi again soon, but we'll see.

On the whole John is doing great, thrilled to pieces that dad is here and so am I!

Day 54: Dad is coming tomorrow!

John actually slept most of the night, okay we were awake at midnight, 3am, 5am and then up at 8am but he went back to sleep quickly each time and all in all a little more sleep did us some good. John has walked farther, stayed up longer and gone faster today than any day since surgery. We even got to hook his tube-feeds up to his g-tube instead of his j-tube and since he's not puking we should get to pull this nasty g-j-tube out tomorrow and put his nice polite little g-tube back in. This should let his skin start healing better and maybe start getting life back to normal again, also it's another step on the road to home.

Despite the extra sleep I started out the day wondering if I was going to be able to find anything good to put on the blog at all, and then the day turned around for us so well. I'll tell you though single-parents have my respect, that they aren't the ones shooting up schools and blowing up buildings flat amazes me. No wonder my mom was a little weird when dad was gone on the road for extended period of times. When we first came here and saw all the moms running all over the place in their pj's all day long and out to the smoking area as often as possible, I thought, well never mind what I thought, I'm here to tell you I'm impressed that they aren't sporting hip flasks and smoking something more powerful than a Marlboro. I finally called Mark today and told him that he needed to come tomorrow and rough house with this kid, as much as John can take it, because he's been trying to push, shove and kick at every opportunity for the past several days. I'm beginning to feel like that other kid in the car, you know, the kid who is always being kicked, touched, breathed on and looked at. My sister can vouch that she was that kid and my son is making sure that I have plenty of regret for my childhood misbehavior.

But our day did turn around and this afternoon we had a great time. John has gotten to run down the tunnel twice today, and we even did our first day of school. I've been meaning to get us back to working on school but just haven't found the time and energy. So today I told John that we would get out the school box and he was beside himself with excitement. For right now we are working on letters and we have this great box full of stuff that was made by Julie Middendorf's daughter and it was certainly a hit today. John even managed to sit in the high-chair in the cafeteria a couple times today and was a great helper and laid so still when I needed to change his dressings, even though it hurts to have all that tape stuff pulled off.

So the day that started off bad has ended very good and I'm looking forward to clinic tomorrow to see if we can get rid of this tube and how much the piglet weighs and then of course best of all Mark is coming in tomorrow evening. Will I update the blog while dad is here? Hmmmmmm...I'm not sure, so if you don't see an update until Friday or so, don't worry, we're just too busy enjoying some dad time!