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.