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!

Day 53: Blessings from Home

John's day, well part of it was spent in the treatment center because his g-j-tube seemed to be coming out. On one hand this thing is wonderful because he's already increasing on tube-feeds despite a tummy that isn't quite emptying correctly yet, on the other hand I hate this thing because it's huge and it's eaten his skin up. But today we found out what was wrong with it and things seem to be going better. This evening he had a great time playing and all in all the day was pretty good here.

At home the day was wonderful. October is Pastor Appreciation Month and Mark's congregations showed their appreciation in ways that made his smile so apparent I could 'see' it over the phone. Being apart is hard, him being home away from us is hard, but the good people of his two congregations make it easier and better. God's blessings come through means of grace, and today those means were the people of Peace and St. Paul's Lutheran Churches in Slater, Missouri, we thank them, and we thank God for them.

Day 52: Tiny Adventure and Tagged

John's day has gone pretty well. Since going so far yesterday he was kinda pooped most of the day, but this is what I see him do and expect that tomorrow he will be going/doing even more. Today was the first time that he felt good enough to head down a hallway that he didn't know, but after a few minutes he was too tired to go further and was ready to head home. He's already in bed, asleep, of course I have to do replacement fluids and change meds and stuff so that will probably not let him sleep peacefully, but hopefully he'll get some rest and be ready to play tomorrow.

Tagged - Charity the Lutheran Hen tagged me to give me something else to blog about. Thank you! I've been thinking of this all day and what I was going to write, it's been nice to have this to think of.

Here are the rules.
1. Link the person who has tagged you.
2. Tell seven true things about yourself.
3. Tag seven new people.
4. Leave a message with the person you have tagged so they know about it.

Seven True Things About Me:

1. I'm a binge reader - I love books, and love to read, but find that I read a half dozen books in a short amount of time and then don't read for a bit and then I'm off to another set. Since John's surgery I've read Little House in the Big Woods, Little House on the Prarie, 101 Dalmatians, The Christmas Jar, Real Food, Eat Fat,Look Thin and am now slowly making my way through Farmer Boy.

2. I love to sing, but I stink on ice. I have a wonderful 3 note range, so my favorite way to sing is either alone in the car, or better yet sitting next to Mark in church, he sings so loud and so beautifully that it just drowns me out and lets me enjoy singing without worrying that others will have injured ears when it's all over. This works out perfectly as my absolute favorite things to sing are Lenten Hymns and that is when he gets to sit with us the most.

3. I really like to sew and it doesn't much matter what. I've enjoyed making quilts, clothes and even home dec items but find that I need peace of mind to machine sew and yet hand sewing or crocheting brings peace of mind, which is weird, but then I tend to be weird so there you go.

4. While I was growing up my parents repeatedly told my sister and I that we could do anything that we set our minds too, and I will admit that I'm pretty convinced of this. It's a nice mindset to have in that it makes me confident of my own abilities and yet it drives me crazy too because there are things that I've not been able to accomplish and I'm positive it's just because I need to try harder.

5. Even though I haven't listened to it much in the hospital, at home I'm a talk-show junkie, well not all talk shows, my favorites are Glenn Beck because he's just a nut, and Rush Limbaugh whom I have to be careful with or I find myself using his phrases in places that I wish I hadn't just said that.

6. I'm a talker, anyone who knows me in person will vouch for that, it's part of the reason that I like to blog so much, it's also the one thing that probably drives my husband the most crazy. I don't like to talk just to hear my own voice, but I do enjoy getting to express my opinion on everything and have over the years had to learn to shut-up and tone-it-down, but I think I've come a long way from the 3yo whose grandmother gave her a book on tact, and just for the record that ladies lipstick was ugly, but maybe I shouldn't have told her so :)

7. While here with John I've been reading books about whole foods, raw milk and grass fed beef, sustainable resources and such. On one hand I am a Reagan voting, pro-life, right-wing nut job Republican, on the other hand I'm finding that I'm fairly well convinced of much that I'm reading. It's a paradox, but then I'm used to living with paradoxes because I'm firmly convinced that I am simul justis et pecatur.

I'm sure everyone in the world has gotten to do this so I only know of one person to tag, okay Angie you're it!

Day 51: Confidence

John slept better last night than he has since surgery, even with that he was up at 4am with tummy pain, but then was able to sleep in until 8am and woke up asking for a bath.

He's still too tender and sore to sit in the high chair in the cafeteria, so this morning he sat on my lap for breakfast and then rode for a while in his stroller. A brief rest and he was ready for a walk. He did great, he walked farther today than ever yet since surgery. Really I think that rebuilding his confidence is as needed as rebuilding some muscles. Not only is he dealing with a new center of gravity because of the surgery, and the attendant pain, but because of the pain we had to take the lateral supports off of his gait trainer so he's having to deal with essentially a new gait trainer too. Even with all that today he made it out of the room, to the elevator, through his favorite doors to open (the handicap button is low enough he can open them himself) through the underground garage and back to the elevators before he was pooped out and needed me to pull him. Each try out is better and longer and yet I can see that he's still frustrated with the lack of ability to go and do. He certainly has no chance of catching patience from his mother!

For now we are getting settled in. I finally found the ethernet cord so that Mark doesn't have to blog for me, and got enough furniture moved around here that it pretty much gives John his own room. He was on the bed when I moved it and he thought that was pretty cool. It feels really good to be taking care of his meds and stuff again. His new med schedule is pretty intense, he has either oral or IV meds at 8am, 11am, 3pm, 4pm, 8pm, 9pm, 11pm and midnight and still needs to have his TPN, replacement fluids and formula too. With all that and a lab and clinic appointment each week I think we're going to skip therapies altogether until the med schedule slows back down to it's normal 3x a day routine on the 1st of November. That way we can spend as much time rebuilding confidence and just enjoying being a little boy as we can get.

Day 50: Back in the Lied again!!

John has finally settled in and is sleeping peacefully. He has stretched himself all the way out with hands over his head like a referee signaling a touchdown or field goal. Please note the new address for sending mail. Gina will update the blog tomorrow once she gets settled in.

Mark (who is writing this because Gina can't find the ethernet cord yet)

Day 50: Discharge!

Of course it's still in process and could take well into the afternoon or evening before we are settled in the Lied again, but we're excited! John got his staples out today and is settling down for a nap. He had a pretty rough night, both passing gas, and scared, what of I'm not sure but I think getting him back into the other room and letting him get several hours of uninterrupted sleep is going to be helpful. As I was putting the day # in this entry, it amazes me that 50 days is all it took from our 1st day here to discharging after a STEP, as malnourished as John was when we started we figured we wouldn't even be to the STEP yet, much less going out-patient after one. On the other hand 50 days seems like a very long time, especially when I think about all the things that have occurred at home. My longest time to do this was in New Orleans with a following week in St. Louis before we went home and that was 12 weeks total, so we haven't broken the record yet but probably will here. John and I have already been over and seen where we are moving too, it's right across from the laundry room, hooray, and on the other side of the building so that we have new scenery to look at, but still on the same floor so we know the housekeeping ladies and one of John's favorite pictures in the hospital is right when you get off the elevator. I'll post the new address tonight!

Day 49: Another Day

I've heard runners use the term 'hit the wall', I'm not a runner by any means, but it seems to me that they mean something about getting fatigued to the point where they don't think they can go one more step. Today was 'hit the wall' day for John and I both. At one point we were both just laying on his bed looking at the ceiling, I don't know exactly what John was thinking, but there was a good bit there that I was wondering how we were going to make even one more day. After a bit I took one of his stuffed animals and tossed it at the ceiling, he erupted in giggles and a new game was born, along with a fresh breath that carried us through the rest of the day and makes me sure that we will make it all the days that we need to be away from home.

Today we got the news that we are going out-patient tomorrow, we can't wait! Being in-patient is good right until the day comes when the nurses are no longer doing things that I can't do myself. Not that there is a thing wrong with the nursing staff here, we have had great nurses and techs, ladies that have taken spectacular care of John and made our stay easier and more delightful by their very company. While it's a break that I don't have to make formula, pull meds, set-up TPN, figure replacement fluids, it's also a little maddening that I'm here and don't have any formula to make, meds to pull, TPN to set up or replacement fluids to figure. I'm glad we are headed out-patient tomorrow, it will get exhausting too I know, but for now the change sounds really good.

Over the last couple days I've been thinking about the things that make a prolonged hospital stay better. It would be easy to dwell on those things that make it harder but it makes my day better to think about those things that make it better and so I thought I would share them.

1. Faith in Christ - How parents make it through this without that peace I have no idea, but for me knowing that we/this is all part of God's plan and that we are in His hands makes this time away from home bearable, and lets us not merely survive here but thrive even at the times when we wonder if we are going to make it through one more day.

2. A Rock Hard Stable Family - I have met parents here and at other hospitals who are going through divorces or similar turmoil and I can't even imagine it. Knowing that Mark is home, keeping our house going, taking care of his churches, the dog, fish and himself, knowing that I can depend on him 100% to be faithful, not just in fidelity of marriage but in friendship, in thinking of us first, in being husband and dad even though he's many miles away makes it easier to be away.

3. Friends and Family who Pray and Care and Write/Call - From visits, to phone calls, to cards in the mail, an email here or there or even a comment on the blog, knowing that there are all these people out there who love and care for John and us, brings a ray of sunshine on even the gloomiest days around here.

4. Hospital Staff - From the housekeeping staff to the doctors and everyone in between the hospital staff makes this stay easier for us. Even tonight when I was going through the cafeteria there were many people who were asking about John and telling me when they were coming on shift next and that they were expecting to see him for breakfast on Friday. The people on the actual team here are great, and so are the rest of the staff, we have met people from every realm of this hospital and all of them are amazed and impressed with this little boy.

5. This Crazy Blog Thingy - I don't know exactly why, but having this place to talk about the things that go on makes a difference. Occasionally I get that phone call or email from someone when I haven't updated in a couple days and it makes me somehow more able to hold onto the little sanity that I've ever had knowing that others are reading this ramble.

Day 48: Walk a bit

Today brought big changes. John is sitting up much better, and was even able to go for a walk in his gait trainer. He's only had tylenol a couple times today and no stronger pain meds at all. His side is still tender and his g-tube site is still icky but getting better. He worked well with PT, OT and even the education lady came and they made a pumpkin together. Best of all he was happy and blowing kisses today! I started this morning asking to go out-patient and hopefully we'll get out tomorrow, but only time will tell.

Day 47: Wagon Ride

We ended the day with a wagon ride. John slept through most of the afternoon and then woke up CRABBY! We thought he might need pain meds, but he refused it, so then we thought he might need his g-tube vented, but he didn't put out anything. Finally when he settled down I asked him if he wanted a ride in the wagon and that was exactly what he wanted. The little boy who has been sure that he couldn't sit unsupported anymore rode in the middle of the wagon, sitting unsupported, from his room to the elevator, all the way out to the parking lot and then back, he had a great time but that pretty much wiped him out for the evening and he's now snoozing. Tomorrow we should hear more about what is going on with his tummy, but for tonight he's sleeping peacefully without being vented.

While we were out for our wagon ride we met a dad whose first baby was just born and is currently in the NICU with intestinal issues, he asked me if it was worth it, and without hesitation I was able to tell him 'yes, every moment of it'. It amazes me, no matter how bad a day is or how scary or worrisome it is, it's still worth it, it's still just great to be John's mom, here, at home, wherever, there just is no better job in this world than mom.

Day 47: So far so good

So the CT Scan is normal, no perforation, no abscess, no hernia, and while that's good news as there are no emergency surgery plans, it also means no answer. Little boy is conked out, they gave him a sedative for the CT scan so that he could hold still and he never fell asleep until we were all done and back in the room. Silly boy!

Our other news - it-so-stinkin-figures news is that the part on the Jeep that is dying is a $700 part, it could go without notice and they don't know how soon they can get another one because of course it's on backorder and will have to be gotten from another dealership that has one. Mark did ask enough questions to know that if it dies while he is driving that he will still have steering and brakes and also to get the part number and name of the nearest dealership so that he can call and beg the parts manager to please ship the piece quickly.

The weather here is a fine mist, the sky is grey and if the temperature was right it could so turn into snow, some sunshine would be nice, snow, not so much.

Day 47: Inevitable Steps Backwards

Life in general seems to be about taking a few steps forward and then going backward and trying again, John's health has been that way from the beginning and this is no exception. Today John will be going for a CT scan, his side is hurting so much that even a light brush of your hand makes him wince and move and the pressure of a stethoscope will make him gasp with pain and nearly bring him to tears. They are looking for an abscess, they are also trying to figure out if on the other side we are looking at his stomach trying to herniate between the alloderm and rib cage, on top of that he is growing both gram positive and gram negative bacteria on his central line. The good news in all this is that they are on top of this and looking for answers now, the antibiotics that they switched him too have kept the fever away and the line infection is only on the line and not in his blood in general. The doesn't-that-just-figure news is that Mark has to take the jeep in for a power train control box or something like that and is stuck in Missouri, we're praying that if John needs surgery to rectify any of these issues that the car repair place will have the part on the shelf and being oh so thankful that they will take payments. No matter how much we love our one-car-payment and one-car-insurance way of life there are days when it has its drawbacks. Overall John is not as perky as he has been the last couple days, but he was still excited to see and play with breakfast even if he didn't eat any of it and he still has a smile that reaches his eyes, even if he's not quite up to blowing kisses today.

I'll post again as soon as I can after the CT scan. It's been a while since I said thank you for everyone's prayers, I'm still thankful for them every day, we live in the confidence that John is not only in Christ's care but that His plan for John was made from eternity and that even includes all these wonderful people who are here to care for him.

Day 46: Fever, Food and Morphine

John woke up this morning early, shaking all over so much that his teeth were chattering because his temperature was spiking so fast. He went from normal to 38.6 in about a half-hour. Pretty scary stuff. We still don't know what caused the fever but it came back down to normal and hasn't spiked again through the day. Actually this afternoon he was sitting up, supported, and playing and laughing and having a good time. They have put him back on Zosyn, Fluconazol and added Vancomycin and will continue them at least until they know what caused the fever, but for now things look to be under control.

His formula feeds started last night at 10ml/hour of 15 cal/oz Neocate, and was upped to 20ml/hour today, so that is going well. The news on the upper GI is that it wasn't followed long enough to see the contrast get into his pelvis, but it seemed to be flowing well, if slow, and since he's pooping they don't know if they will need any further tests, if they do it will be another barium enema, but I'm hoping it's not needed. He's still puking a bit, and needing to have his g-tube vented now and again but today they decided that he can eat and drink as he wishes so long as we can control the puking. He has eaten a few bites and once he was just handed his cup and allowed to drink all that he wanted he didn't want that much.

The morphine came late this afternoon after his Right JP Drain, the wound drain was pulled. We will certainly be giving him the morphine before the next one comes out. The drain itself is like six or so inches long and as big around as a McDonald's straw and was curled between the skin and the alloderm that they put in. When it came out it hurt and the poor kid screamed and screamed and screamed until the morphine started kicking in. Even tonight his side is still sore and they tell me that it will take a couple days before the tenderness is gone. We're going to be giving him his Loritab through the night and hoping that by tomorrow he won't be needing it as often but I'm all for letting him have it until the pain of this goes away.

Day 45: J-Tube Feeds

Weekends at the hospital are a nice break from the daily routine of therapies, go here, go there, hectic routine. Here in Omaha it was rainy and cool, but when we did get out for a walk this afternoon we were able to go outside for a bit as it had stopped raining and warmed a bit. John has been doing really well all day and is actually getting feeds now, how well they will go, we'll see. He did sit up for me a little better today and was even patient during our walk when I had to keep going and checking the laundry, I'm certainly done complaining about the inconvenience of having my own washer and dryer in the basement!

Day 44: Sitting Up is Hard to Do!

John's day has been one of challenges. He started by throwing up at 3am but then was feeling better and was ready to read books for a bit. After several more hours of sleep, thankfully, we headed down for his upper gi test. This was done in the same room as the Barium Enema so he was understandably a little upset to start with but then was cool with it when he realized that they were leaving his pants on, poor kid. But as the day started with puking, so it continued, about 20 minutes after the doctor put in 120ml's of contrast solution into John's stomach, John gave it back plus some. When we got back to the room he threw up several more times and by the end of the afternoon he was on zofran trying to stop the nausea. We don't know if it was a reaction to the contrast solution or maybe the new blood pressure med or what, thankfully he hasn't puked this evening.

I still don't have the results of the upper gi, should get more info on that tomorrow. He continued to have x-rays throughout most of the day waiting on the contrast to travel through. The nurse practitioner did come and tell me that this isn't totally uncommon with a huge bowel surgery and that they will start feeding tomorrow, even if they have to feed through the J-tube, a tube like his g-tube but goes into his small intestine, and even if he's puking, they still feed and replace what he lost. She did assure me that we would be back to his polite little g-tube in 4 weeks or so, thank goodness the current g-j-tube is honking huge and icky. We also talked about the criteria for going out-patient - tylenol only for pain control, wound drains removed and feeding advancing. Even with all the puking she didn't think it would take long, and already John is on just tylenol tonight.

Now that his pain is more under control I was surprised that he wasn't just able to sit back up unsupported like he used too. Okay, I expected him to be a little shaky, but he was downright scared. The physical therapist came by and helped him sit up for a while, and then I sat him up again this evening. I can tell that each time he is getting a little more confident and stable.

He did get rather dehydrated from all the puking today and so spent a good portion of the afternoon feeling bad and getting rehydrated, but this evening he was in fine form. He played with his sock for a good while, we put it on each of his animals and he loved ripping it back off their feet and then when I turned back around he had put the sock on his own hand. I don't think that I've ever seen him do that.

Day 43: Mommy is a Crybaby!

I'm sure that's what I would have heard if John could speak using words, instead I was treated to a little boy who was laying in bed, making the sign for crying and then looking at me and giggling and then doing it again and again and again. This carried on for a good 15 minutes or so, little silly thing.

I've always been a person that cried easily, both for happy things and for sad things, oh and scary and sentimental and well, okay, I cry easily. Today we found out that John needs to start blood pressure medicine. We've been dreading this day for a long time, and now he's on the meds and we don't even know what caused it. Could be just the stress of surgery, etc., and go away with time, or it could be the beginning of another chapter of John's life. I cried when they told me, and I cried again when I told Mark, that was the time that prompted John to start making fun of me. The best thing about a great husband and a silly son is that why Mark was reminding me that Christ is the one who has always and will always take perfect care of John, no matter what goes on with him, and John was mock crying and giggling at me.

When he was done with this then he decided that he would start dialing on dad...



...and then his new puppy got in on the act too...



a silly boy all the way around!

Today is the first non-morphine day, well okay about 1am will be 24 hours, but we've made it through a PT, OT and a long stroller ride with no morphine.

It's also the very first time that John actually watched Clifford and Curious George on tv and enjoyed the stories and then later was laughing at Glen Beck who was laughing at someone else on his show. It's been a roller coaster day, but in the end a good one.

John's small bowel study is tomorrow. If all goes well they will start feeding him and then according to the nurse coordinator we could be out-patient as early as middle of next week. We'll see what the morning brings.

Day 42: Smiles to share

Today we had smiles. We still can't quite get off the morphine, but John is still getting better each day. The medical news of the day is that he should be starting on feeds sometime this weekend and they look for us to be outpatient again by next Friday, of course that is if there are no infections issues etc. We also found out that John's 104cm of bowel, if working properly, is enough that he should easily come off of tpn. Normal bowel length for a nearly 4 yo is 250 cm so John is now approaching half, he's never before been past 1/6th so this is great! Function is everything though and so we must still wait to see how it works. The nurse coordinator who was giving me all this info today also told me that it is possible that John could go home by his birthday 12/13, if all goes well. We certainly hope so, but we're still prepared to be here for the originally stated 3months to a year.



John is measuring his leg, actually just playing with the tape measure that I used to measure his belly with. I've been amazed at how differently shaped he is, and today measured and his belly is 21 1/2" around that's a pretty normal number for his overall size! I can't wait to see how it affects his support and to see how his clothes fit.

Okay, the best for last, Charity, LutheranHen and her brood came to visit today and it was such a great break from the hospital. It was great to laugh and talk and to watch John get to play with the kids and wow, anyway, such a great break from here, thank you, thank you, not just for the wonderful things you brought but for the company!

Day 41 and we have poop!

Okay, okay, I know the world doesn't revolve around poop, but at least John's world does and last night was the first poop that we've had since surgery. He's still kinda ouchy but is finally more hydrated and so isn't screaming for water every moment. He was able to sit up and play for about 1 1/2 hours today and I have hopes of taking him out for a stroller ride this afternoon. We're waiting now for the q-ball, local anesthetic directly applied to his tummy since surgery, to be taken off and then it will be time to go for a ride :) He should have his upper gi on Thursday and then after that if all goes well they should start g-tube feeds. Ah, the next step on getting back to out-patient status which is the next big step on the way home.

Day 40: All Moved In

Mark is on his way home and John and I are settled in his new room. We are thankful that there was a little private room available as it affords us some quiet and privacy. So far John's been doing well, he even gave us a few real smiles and managed to sit up unsupported for a minute or two. He is still in some pain from surgery, and so is getting his morphine ever 3 or 4 hours, but mostly he's just aggravated that he can't have as much water as he wants to drink. He had gotten kinda dehydrated in the PICU and so since they are catching up with fluids I'm hoping that some of the driving thirst will be lessened. Hopefully tomorrow he will feel good enough to get up in his stroller and go for a bit of a ride.

Day 40: Room Air and a Room

This morning John is doing great, he's on room air with no need for oxygen and headed out of the PICU and to a regular hospital room sometime today!

Day 39: Second Rough Night...

...is over and on to the day. John was a little more comfortable through the night, still morphine every 2 hours, and he still really hurts at the almost-due-for-the-next-dose time but at least there was a handful of times during the night that he actually slept. He did pull out his NG tube and then they came and replaced it, but finally it is gone after rounds this morning, and he should get to keep it out if he doesn't throw-up, thereby proving that he still needs it. He also spiked a temp in the night and they drew blood cultures, but it went right back down and hasn't spiked again. Mark was with him during rounds today and made sure that he got some ice, not only is ice a liquid and John is dying for a drink right now, but he loves to eat ice, it's one of his ways of dealing with anxiety. John is going to remain in the PICU until they know what caused the fever and probably until he no longer needs oxygen. 3 or 4 good coughs and he would clear his upper airway, but he doesn't want to cough, and really who could blame him now. They were able to get the JP drains working, these are wound drains that are placed between the abdominal wall and the alloderm which will let the alloderm more quickly and more securely attach to John's abdominal wall. All in all, despite still being in the PICU we are seeing progress, not only in John's ability to rest but also in attitude and such. Shortly after Mark left last night John told me that he wanted his shoes, to walk, and to leave. Later he was asking for the curtain to be opened, and then closed, the tv to be on and for his hearing aids. His ornery level is returning to normal also, while the housekeeper mopped his room and dad snuck out for a minute to run to the bathroom John laid in his bed and peacefully and happily watched tv and watched the housecleaner. When dad came back he stood where John could see him and watched and John looked content and like he was doing fine, as soon as he moved so that John could see him, John started acting like he was hurting and needed a drink and was uncomfortable. What a stinker! But it's nice to see that little personality is still just the same :)

Day 38: First Rough Night...

...is done and John is doing a little better today. One of the hardest things for him at the moment is breathing against a normal sized and rather ouchy abdomen, but once they moved him over and let me snuggle him in the chair his anxiety level dropped and he's actually being able to get some sleep on his morphine, instead of fighting it and being so scared. He's already discontinued his own catheter, and he will get the wound drains removed today as they aren't working correctly. He has to keep the NG tube one more day but it should be leaving us tomorrow, this will also help his anxiety level because he just hates this thing. They've been able to turn his oxygen down and I suspect he won't need it but for maybe another day if that. For now he is cuddled up with dad.

Day 37: Through Surgery

John came through surgery very well. He is currently in the PICU and Mark and I will be trading off staying with him so that he doesn't wake up without one of us there. The surgeon was able to turn 42cm of dilated small intestine into 103-105cm of small intestine that is the proper size and hopefully will work much better. She was also able to use alloderm, a tissue thingy that I don't completely understand yet, to reinforce his abdominal wall and at the moment he looks really strange, not just because of the tubes and drains and such, but because his belly now goes straight down from his rib cage to his hips instead of laying out both of his sides pretty wide. She was able to get the liver biopsy and his liver looks pretty and pink just as it should and she was also able to remove his gallbladder which was inflamed and probably full of sludge or stones - no wonder the kid was complaining of pain in his side the last couple of months. They are using a new pain management system that pumps local anesthetic to the wound site and then he gets morphine too, so while he's not overly comfortable he's not horribly in pain either, and has already decided that his hearing aids should stay in and his covers should stay off.

Thanks for your prayers!

Day 36: Surgery Tomorrow

This week before surgery has flown by and the moment is almost upon us.

Monday evening we got to spend with Charity and her family again, we had a great time! Somehow her house is in a time warp, as in time here at the hospital slowly crawls by and when we are having fun getting to visit and John is getting to play with the kids the time just flies by. We look forward to getting to visit again when John is feeling up to it.

Mark came in on Tuesday and since then we have been running and playing and chasing John up and down the hallways letting him enjoy every moment of freedom he could get before surgery. Today we took him to the zoo, this time we let him take his gait trainer into the aquarium and he loved it, he was pointing at the sharks over his head and following them up and down the tunnel, it was as cool to watch him as it was to watch the fish. He rode through the rest of the zoo in his gait trainer and was amazed that giraffes were really that big, tigers are huge and that elephant is sleeping!



We check in for surgery at 9:30 am tomorrow, surgery itself isn't scheduled until 11am and they tell us that it could be as short as 3 or 4 hours and as long as 6 depending on what they find in there. Along with the STEP procedure they will be doing a liver biopsy, just to check and make sure everything is okay, and will also be removing his gallbladder as most short-gut kids have to have that done eventually anyway. The surgeons name is Dr. Sudan and she is certainly the tool through which God works many miracles for these little guys. The plan at this time is for John to go straight to the peds floor after surgery, so one of us will be able to be with him constantly.

Thank you again for your prayers, we are excited about this and scared all at the very same instant and find our only peace in placing John in the merciful hands of Christ and knowing that God's will for him is perfect. I will post an update tomorrow evening and let you know how he's doing.