Friday, February 29, 2008

Beware World

John is now tall enough to reach the handles on the front doors of the Jeep from the outside, thankfully he's not yet strong enough to open it. We found this out yesterday evening when we were getting ready to load him up and take him home and he just ran up and grabbed the door handle. Yikes!

We did finally find out that the infection that he has is 2 ornery rotten bugs klebsiella and E coli. Both pretty nasty bugs, both things that normally live in our guts but these ones have escaped the gut and decided to go for a ride in John's blood stream. A serious infection yes, scary, not so much, well at least not this time because it was caught early, he doesn't have resistant strains and he's so much bigger and stronger than he used to be. He'll be on antibiotics for 14 days after his first negative blood culture, and we might have one of those today, that would be cool.

Even fighting an infection he's still running around the house, bringing me books to read to him, opening everything he can reach - which is practically everything at this point and playing. He looks amazing for being sick and hey, he's now 30 pounds, it's amazing to realize just how big he's getting.

Tuesday, February 26, 2008

Zoom, Zoom, Zoom...

...went John's little car. It zoomed down the table, it zoomed onto the floor, it zoomed on the floor, it zoomed on the chairs and it zoomed from person to person as John found yet someone else to play with. We loved watching this and everyone involved, most especially John, seemed to have a great time. All this took place at the hymn-sing and dinner out at the country parish Sunday night. It was great! We got to visit and talk and catch up a bit with friends we don't see very often and John had a great time too!

At the moment though John is snoozing in the bed at the hospital, yep, again. We thought he had the flu, after all we're pretty sure that Mark had either flu proper or something that plays flu on television, but we were wrong, it's a central line infection. Thankfully it was caught very early, and he's already bouncing back. He started running a fever last night, Tylenol kept it down until 4am and then it was coming up too fast 101.1 to 101.5 in just a few minutes so we loaded him up and took him to Columbia to the ER. By the time we got him there the fever was back down and he was ready to play. He's snotty and congested and so when he tested negative for flu it was assumed that it was just a bad respiratory thingy and we were sent home. On the way home his fever started up again and when we got here and checked it it was 104.1, that's way too high for taking chances with little guys with central lines in their chests. So back to the hospital we went. They had taken cultures on our first ER trip, and by the time we were back to the hospital and upstairs for a couple hours it was already growing gram negative rods but by that time John was already starting to feel better and with the proper antibiotics will recover even quicker. They think that they'll know the bugs name in the morning and that means we may bet to bring John back home tomorrow.

The most amazing part of all this is that he decided that he wanted to walk for a while and he can now reach all the buttons on the displays in the hallways and is strong enough to push them on his own. It's been a while since we saw him walk up and down the halls there, and I don't guess I really realized just how tall he was getting until I saw how much higher he is compared to all the toys and paintings at the hospital. Wow, that boy is growing up a lot and watching him run around today he looks like such a little boy. I'm sure that sounds weird, maybe it's really only a mommy thing, but even when he was upset and cried a bit when they stuck him for blood it wasn't a baby but a little boy cry and well, my little boy is growing up.

I'm home tonight cooking the desserts for a funeral that is going to be at the town church this Thursday. Tonight with the whole house smelling like baked yummies, John in the hospital, a funeral coming up for a 30 year old man with several children under 5 it would be easy to be down and depressed, but I find myself thankful, thankful that I can do something helpful, thankful that John is progressing despite the crazy health stuff that happens to him, thankful that the family of the man who died has the hope of Christ to hold onto and in the end I'm thankful that in this vale of tears, even on days that have been long and stress filled the blessings of Christ are evident to those who have eyes to see and ears to hear.

Friday, February 22, 2008

One Silly Boy


One silly boy, I don't know who, has learned to remove the weight from the homemade Roman shade in the dining room, and race at top speed across the floor with it, hockey anyone?


One silly boy, I don't know who, has learned to swing that weight above his head, that's not as lethal as the dowel rod that we use for a rolling pin that one silly boy, I don't know who, has learned to take down from the counter and also swing over his head, and make it fly across the room. Too many sword fight movies with dad?


One silly boy, I don't know who, has not only seriously started to play with his toys, but while I was looking out the window at the lunar eclipse made a big crash in the living room. When I found him he was laying under the toy thingy, did he try to stand up by himself, I don't know. What I do know is that not only was he not hurt, but in the end it seemed that his crying had more to do with him being pinned and being unable to reach all the cool toys that had now landed on the floor than anything else.

Life with one silly boy is getting to be more and more entertaining by the day. He has now figured out how to scoot himself completely across the living room on his bottom, and yesterday when dad left the room to go to the 'library' I found one silly boy scooting himself into the hall. I asked him where he was going and he told me 'dad.' I'm guessing that soon the 'library' will have other patrons. I've always worried about his pump, but he grabs onto the tubing and pulls it towards him so he has more room to go, and if the zipper tabs are tightly latched together with a d-ring he opens the bag and shuts the pump off, turns it on, and reprograms it.

This silly boy is also now doing, on his own, those developmental things that his therapists have been so worried about, he's building with his blocks, he's walking his animals in and out of their ark, and over the blocks at times too, he's driving his cars around and wouldn't you know it throwing Legos of different sizes and Mega blocks in the same bin has gotten one silly boy to sort things by size. He rolls over and over, and then back and over and over again. He also rolls onto his back scoots around with his feet and then rolls further, accomplishing a pretty cool direction change. He will also now bring us "The Jungle Book" and tell us he wants to watch the bear, or "101 Dalmatians" and tell us that he wants to watch the dogs. He does actually watch parts of the movies, I've been impressed. Of course I'm not quite so impressed that he turns the tv on and off, can open the front door if it isn't completely and perfectly closed and reprogram the tv so that people are a sickly shade of green, or better yet the whole world is pink. I didn't quite understand why he needs to steal my cell phone off the bar, how he opens videos on my computer, or adjusts the buttons and dials on the dishwasher, but was pretty impressed that he actually sorted the silverware while he was putting it away the other day, of course he can only do this in his chair but hey, it's something. I didn't realize that he knew where the measuring cups went until he started pulling them out of the dishwasher and throwing them into the proper drawer. I also didn't realize that if the back door wasn't locked all the time he could open it because he can now reach the handle. There are days when I feel like I need to go find that quote from Pinnochio about becoming a real boy, because it sure feels like John is doing just that.

We were in Omaha this week for check-ups. His labs are perfect, he is now 35 1/4 inches tall and weighs 29.4 pounds. Better yet he can scoot all over Charity's living room, flip over rocking chairs, play with the footstool without pinching his fingers off and is getting more into playing with the kids every time we go. We're looking forward to one of the visits after Easter so that we can stay an extra day and let the kids play more, oh and the mommies visit more too! He was a big boy and hugged everyone good-bye as we were leaving, and this time he didn't cry until we were back in the Jeep and on our way into town and he realized that we had returned the books that we borrowed from Charity's kids and that they weren't with us. One silly boy is just that, silly, but in a delightful way that makes even snowy wintry days full of smiles.

Thursday, February 14, 2008

Happy Valentines Day!

Can you tell our little monkey is feeling better? He's made it well over 24 hours without throwing up, he's smiley, and he's sporting new Curious George tattoo's, could the day get better?




Wednesday, February 13, 2008

Just a Cold?

Well, actually, yes, it's just a cold. John has been fighting the thing since last Monday night and it looks like he's finally winning. It took us forever to understand what just a cold can do to John, after all a cold makes us miserable for a few days but then life goes on. For John whether there is snot yet or not a cold always starts with puking, I don't quite understand the mechanics behind this but just like the cold virus attacks the mucus membranes in sinuses and nasal passages for him it hits his intestines first making them just not work as well. His belly starts to swell up with stuff that's not being processed and he starts down the puking road. The height of the puking was last Wednesday, a record 15 times, and today we were down to just once this morning so far. What is making the big difference between the just once this morning and the only once from yesterday and in fact the last couple days is that this just once occurred with him on full g-tube feeds. It's the first time since last Monday that he's been able to tolerate full g-tube feeds, which actually makes sense after all what little kid, or adult for that matter eats as much with a cold as they do without. I always thought that had as much to do with not being able to taste things as anything else, but after all this time with John I'm beginning to think that there are times when our bodies just know that food is not going to be tolerated as well.

We're taking John in for follow-up labs today. Monday's weren't horrible, but they weren't stellar either. But over the weekend not only had he been puking a time or two a day, but we'd also been letting his little belly drain and having to shut his feeds off, or turn them way down and running him a hydration solution for hours trying to keep up. Lol, through all of this John has actually been doing great. There was only a couple days where he just felt bad and didn't want to do much, and yesterday he was in fine form and showed me that he can reach all kinds of stuff in the house that I never dreamed he could get, open file drawers and bring me files, rearrange furniture and all kinds of good and silly boy stuff.

John did have his first physical therapy session on Monday and I'm very pleased with what went on there. We have seen this particular therapist in hospital a few times in Columbia and several times during John's developmental clinics too. It is nice to see someone who realizes that while John may need to develop muscle memory to learn a new task and that might take a good deal of practice, that other things are learned instantly and nothing is ever forgotten. She does think that John needs braces again, but this time a lower one that just supports his foot and ankle and keeps his feet from rolling in. I'm looking forward to seeing her again in a couple weeks, and better even than that I'm sure that John will be excited to go too!

Thursday, February 7, 2008

Knocked Out Helper


We are celebrating Mark's birthday today, and I was waiting for my helper to make daddy's brownies, but alas my helper has pooped out on me. Yep, that's a book on his head, poor kid, the current cold virus has knocked him for such a loop that he couldn't even get the book open before he fell asleep. He is learning to sign "happy birthday daddy" and with help pulls it off with a humongous smile followed by a few "i love daddy's".

John appointment in Omaha this week went very well. The fancy dancy upper GI test took most of the morning but he was great for the whole thing and even got to where he would pull up his hospital gown when it was time for another picture and then pull it down when that one was done. The official results of the test weren't in when we left but the doctor doing it told us that she didn't see anything like a stricture or grossly enlarged section which would require more surgery.

At that point John's belly was doing much better, and his lab results were perfect and so his drinking binges have been condoned. We are now keeping on hand his special orange juice, ORS and today are trying some special apple juice. He's doing such a good job drinking responsibly and we're so proud of him for it.

So we got to come home, thankfully through just the beginning of the snow storms and even though our sweet little guy has a pretty bad cold that's been making him throw up a lot, he's remaining hydrated and fighting his way through it.

We are starting a new regimen with John on Friday, adding microlipids to his formula instead of in his tpn. We also brought home an avocado from the grocery store to see if we can get him to eat some of it. Once the cold virus is fought off I'm sure he'll be back to eating and doing well.

We missed Ash Wednesday because the little puking boy just needed more rest, I don't know that he'll make it to the church fundraiser on Saturday night but we're hoping that the cold will have run it's course and we'll make it to the Divine Service on Sunday. John cried last night when he found out that he couldn't go to church, and we might both cry about Sunday.

An Aardie


What's that? It's an award from the Vark at Aardvark Alley. Lol, and here I thought that we were so far under the radar no one knew we were out here. If you're looking for blogs to read from fellow Lutherans, this is the place to go to find the link to a ton of good ones. Thanks Vark!

The Closest Book

Paula included me on the fun of this one.

Here are the instructions: grab the nearest book, turn to page 123, go down to the fifth sentence, and post the next three sentences.

It's pretty hard to determine which book is closer. Okay, the closest one is the Slow and Steady Get Me Ready by June R. Oberlander, lol, not because I'm faithfully using it, but because I sure wish I'd get better at using it.

Page 132, fifth sentence and following: "If the child is reluctant to say the rhyme, repeat the chant and pause at the last word of each line. Encourage the child to listen and 'fill in' the missing words. After practicing this rhyme several times, tell the child that you are going to look for pictures of two things."

Thanks for including me Paula, now I'll share the fun with Angie and Charity.

Two Things

Angie tagged me a while ago and I finally have a bit of time to play today.

Two names you go by: Gina, Mommy

Two things you are wearing right now: comfy socks, comfy t-shirt

Two of your favorite things to do: cooking, playing on the computer

Two things you want very badly: all cold viruses to make a detour around my family, spring to hurry up because I'm sick of winter already

Two favorite pets you have had/have: Lucy the sweetie dog that we have, and Einstein the golden retriever that we loved and one of these days when we live somewhere that retrievers have enough room to play we'll have Einie II

Two things you ate today: Angie's yummy sour cream egg casserole, some chocolate off the beater from making Mark's birthday brownies

Two people you last talked to today: Mark and John

Two things you’re doing tomorrow: pay bills, make soup and cookie bars for church fundraiser on Saturday

Two longest car rides: Stevensville MT to Fort Wayne IN when we moved from vicarage to last year of sem; Hamilton TX to Stevensville MT to take care of my sister and her boys when she had a bad horse accident

Two favorite holidays: Easter, Christmas

Two favorite beverages: Water, Earl Grey Tea

Saturday, February 2, 2008

Drinking Responsibly

One of the hardest things for me to understand has been John's drinking problem. The kid is a pretty hardcore drinker, between 21 and 30 ounces a day and is always ready for more. Of course he doesn't want to drink his formula, and who could blame him, and would prefer to drink whatever we are drinking thus Mark and I have kicked the Coke Cola habit completely because John doesn't do well with much sugar and corn syrup is the perfect thing to grow nasty little yeasty infections in, but mostly he'd just prefer to drink plain old water. The IRP team has encouraged us to move him to ORS, a non-flavored Gator-aid kinda thing, comes in a powder and we mix it with water. John has turned his nose up at this repeatedly. Finally the poor IRP doc had all she could put up with and told me that John's excessive binge drinking has got to stop and I'm the parent and I have to make him quit. Ouch! Finally she and Brandy the nutritionist explained that because water is hypotonic, basically doesn't have anything in it, it's very hard for John's short little gut to absorb and it is basically giving his nutrients and such a faster ride out of his system. So with better understanding of the devastating effects of his drinking issues, I sat John down and explained to him that ORS was his new drink, I knew he didn't like it but that was just tough, sometimes, more often than not we have to do things we don't like. Of course I put it in better 4 year old terminology, but he took the cup containing the hated ORS from me and gave it a shot, yuck. An hour later he was thirsty, I gave him the cup again and again yuck. That was a week ago, at this point he's going through nearly a liter of ORS a day, and seems to have sworn off of plain water, even bath water, thankfully. Brandy the nutritionist called and gave me a recipe for homemade ORS with orange flavor, I'll post that on the other blog in case anyone wants to make themselves some home made orangey gator-aid type liquids. I made this concoction for John yesterday, yuck, today he asked for orange juice, I gave him this and he swilled down the whole cup. So on Tuesday we'll find out if switching John's libation of choice now makes his binge drinking okay with the team or if he needs a 12-step program ;)

Friday, February 1, 2008

Back on the Planet

Well okay, we didn't really fall off the planet, but it might have looked that way.

The past several weeks have been a whirlwind of life in our home. Since taking John to the ER on Christmas Eve we've known that something was going wrong again. This is like a quietly ticking bomb off in the corner, we know it's there, we know it's going to explode but we are powerless to do much of anything about it. This finally culminated in John needing to stay in Omaha for a week and we are returning again on Tuesday for a test to see if the problem can be diagnosed. Thus far John has been changed onto another antibiotic for bacterial overgrowth, it looks like this might have been the needed change all along, but we are thankful that the IRP team at Omaha is taking a very pro-active course and doing this test. The test itself will be painless, pretty much an intensive upper GI test, but John has grown very wary of testing and such, so while not physically painful I look for it to be quite stressful none the less. The diagnosis could be anything from hey that new antibiotic works to a need for a further surgical tweaking of John's bowels, thankfully after testing on Tuesday we have an appointment with the IRP team and and will know something then. Waiting is always harder than whatever is needed to be done.

While life with John can be medically complicated, it is still life with a cute little 4 year old who is learning and growing and becoming more and more an independent little guy every day.


John has decided that it's time to learn to dress himself, and the picture shows him trying to put on his own pants. He hasn't quite accomplished this but is getting better at putting all of his clothes on, and taking them back off. He's also getting to where he can do more things on his own, he helps to push his new medication into his g-tube and is even trying to wipe himself and put on his own diapers. Now if we could just convince him to use the potty I'm sure he could learn to pull of his own underwear. But the big problem with that one is for some reason he is scared of the potty, I'm thinking we may end up having to just get rid of the potty that we have a get a totally new one to see if we can get somewhere on this.



While we deal with John's medical issues there is no shortage of life that goes on, including enjoying the company of friends. John always enjoys seeing our friends and their little dog and comes running with bubbles in hand any time that Tiffany is around.

During our week in Omaha, John and I got to spend the weekend with the Bakers. John is fascinated with their kids, he loves to get to play with them and in doing so is starting to play more by himself. I'm not quite sure how that is working, but I'm thankful for it. We got to go to worship with them also and that was wonderful. This is the first time that John has been in a church where there are a plethora of little kids and room to run. It was great to see him in his gait trainer sometimes leading the pack, sometimes following and always having a good time. He even did very well in Sunday School opening sitting between the Baker girls and was good during worship but of course that had to do with as much with the constant entertainment provided by the girls as it did with the new surroundings and with the improved behavior of the tot.

At the hospital John was reluctant to go anywhere near the clinic unless he was told that I would open the back door and let him run up the tunnel. He did pretty well with everything there but of course since he's getting to be stronger, feel better and feeling his oats a bit more he's also realized that he can run away from mom. This is not a good thing and the crowd was pretty entertained the couple of times that I ran after him, caught him, and spanked his tiny hiney. My family has always been pretty well established as the free show and life with John is certainly no different.

During the end of January we've watched tons of politics, John likes to go turn the tv off when the politicians start yakking, and I'll yak about politics on the other blog, we'll be spending Super Tuesday in Omaha and riding home to the results, I'd like to get to vote then, but hey I'm too opinionated to not yak about it anyway.