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.