Wednesday, December 2, 2009

Contemplating the Impossible to Fathom

John is on yet another round of antibiotics for a central line infection. This time he is actually on similar meds as last time but the bugs are a bit more tenacious and nasty. One of them has a reputation for becoming resistant during treatment and so this time he has to have a clean culture before he can come off the antibiotics completely. Throughout this infection John has looked pretty healthy and has done quite well but we all remember well the days when John's central line infections rendered him very ill indeed and no one who was there can forget how close we came to losing him from sepsis and just how awful that sepsis is on a little body. At one point during his worst sepsis episode he was swollen almost beyond recognition, his heart was so weak that he had to be kept sedated and medically paralyzed because each time he woke up he would nearly die because he would get upset with all the tubes and wires and such. No one wants to see John have to go through sepsis again, nor any person.

John's gut is having a very hard time getting itself in gear. When he is on IV antibiotics he is doing well and his g-tube feeds can advance to the point that it looks as if he will soon come off the TPN and be able to get rid of the central line. Shortly after being off the IV antibiotics the bacteria in his gut go bezerk and he stops being able to tolerate feeds at all. We are one more time trying to get the bad bugs in his gut under control so that feeds can go on again. This is a more aggressive attempt than we have ever seen and while we have hopes that it will work we have an equal amount of fear and worry that it won't. John has never had great motility in his intestines and because of that he has places that bacteria can camp out and do bad things, who knows if antibiotics will be able to touch them there.

At John's last IRP appointment in Omaha the doctor told us that it was time to start considering a transplant evaluation for John. They are not giving up on IRP (intestinal rehabilitation) but if John's gut won't pick up and work there will come the time that damage from TPN and danger of a central line infection that won't be able to be handled and will lead to sepsis and possibly death will become greater than the risk of transplant. At the time that John was born the neonatologist told us that because of his dual diagnosis of short gut and prune belly that John would never be able to receive a transplant no matter how bad one was needed. Dr. Mercer, from Omaha, explained that in the 6 years of John's life many things have changed and that these rules are no longer so cut and dried. These 6 years have brought many advancements in intestinal transplant as well and as I look around on the internet and read everything I can find it seems that intestinal transplant is no longer the 'kiss of death' and is getting more successful with each passing year. The survival rate for 5 years out from transplant is now 60%, frankly when talking about my kids life that doesn't seem like much, but then I make myself remember that is over triple the chance that he was given to ever leave the NICU alive.

We have agreed to the transplant evaluation, this is basically a fact finding mission to see if John needs and is elgible for a transplant. We were told that this doesn't obligate us one way or the other, nor does it mean that the IRP team will drop him and not try to continue to care for him. Scary stuff indeed, but then I read things that tell that children with successful transplants have a quality of life that is the same as that of their peers. My mommy heart wants to scream NO and hide in the farthest corner holding on to John as tight as I can to make sure that he never leaves me but when I put my selfish inclinations aside and look at this from the stand point of what is best for John I realize that if he needs a transplant and if he is elgible for one that a successful one is really his best chance at freedom. Over the past couple months that John's gut has been misbehaving and that he has been receiving full nutrition through TPN we have seen John make huge strides in his maturity, his muscle control, his signing, his expressive language skills, his everything, and when I look at it objectively I know that these strides are there because he wasn't struggling for nutrition. Who knows what John's brain and body could accomplish if it wasn't daily fighting for enough nutrients to get by.

So I contemplate, I wonder, I worry, I pray, in the end I know that it is Christ's hands that John has been in all along and that I too rest in those hands which leads me to pray for wisdom that Mark and I will make the best decisions for John.

Wednesday, October 14, 2009


We didn't make it to see Wyatt graduate from Boot Camp but we did make it to spend some fun times with him and all of our family in Montana. John had a great trip and made it home looking great and already asking about getting on more airplanes, his family and such. Vacation was good, home is nice, and I'll post pics and details and such over the next few days - I have lots!

Friday, September 25, 2009

Goofy but...

...currently in the hospital, John that is. He started running a fever this afternoon and we took him to the ER in Columbia. We were rescued from an incompetent surfer boy ER doc by one of the Ped's attendings and so John is doing well, has had all the appropriate tests run, antibiotics on board and now we sit and wait to see what it is. He looks good, he looks amazing and other than being a little overly warm and a bit less energetic than normal you'd never know there was something wrong, but there is. So we wait, did I ever mention that this is how we have grown patience, it is, what little we own, this is how it was wrought and well obviously more is being made.

Saturday, September 19, 2009

Eggs and Little Germans


Can you tell the difference between Walmart brand cage free organic eggs and the real deal from local friends? Here's a hint for those whose never had anything other than a store-bought egg before, eggs are much like chocolate, the darker they are the more flavor they have!




I think we know this guy, or at least a taller version of him. Lol, these pictures always crack us up, there is one with the Little German in the fridge, I couldn't find that one today but had to share these. Hugs and kisses to our favorite Little German!

And yes, I will actually take some pictures of John and post them pretty soon, but hey at least I'm not on a soap box.

Just Saturday

Two weeks before vacation and there are a million things that need to be done a couple thousand that HAVE to be done and the clock is racing faster than we are. John has now made 48 hours without puking! He's still going for tests on Tuesday and we still don't know quite what's going on the kid is having gas pains galore and hopefully they can solve this as little boys shouldn't hold their tummies and cry several times a day.

Tina, my sister, called last night or rather very early this morning to let us know that Wyatt's picture is up on the MCRD website. He is the second from the left on the top row. He's down to 210 pounds and that sure seems thin on a 6'6" frame, we are so very proud of him and continue to pray that his leg will hold up to get him through the crucible that is coming up this week. He has gas chamber this week too and told me that of course every pukes and blows snot it's a gas chamber what did they expect. He's one amazing kid. We fly out on the 30th to see him graduate and I must admit that with all that's been going on here getting excited is coming in fits and spurts but we're so thrilled to be able to go see him despite anything going on here exciting times are coming!

Here's that picture, movie actually. He is Echo Company Platoon 2114.

On a totally different note if Mark and I had a dream BBQ this would be it!


Now wouldn't that look awesome sitting in our yard!

Thursday, September 17, 2009

Good-bye Old Friend and Boy News Too


Be thou comforted, little dog, Thou too in Resurrection shall have a little golden tail.
Martin Luther

I've been holding on to this quote for most of the year, knowing that this day was coming. That day has come and now the little puppy that came to VBS in a wagon in the summer of 1997 that Mark and I just couldn't resist has been laid to rest 12 1/2 years later in the backyard of our home in Missouri, many miles, many years, and many memories away. We named her Lucy when we first held her and she earned her middle name, Tuesday, that same summer when she kept finding one more thing to chew up and destroy on a Monday and I would tell her "you'll be lucky if you live to see Tuesday." This is the only dog that I have ever known that would tear the house down to get in, even one time coming through a storm window because she just couldn't stand to be outside even one moment longer. She was a houdini dog that could get out of any fence at any time, of course she only really wanted back in the house so would escape from the back yard and be sitting on the porch whining to get back in. This past couple years she has been so well behaved that we've not even had a gate on our yard fence and haven't needed a leash for quite some time, after all she just wanted to be with us.

We've been knowing for a couple weeks that the time had come and that we couldn't leave for vacation knowing that someone else would have to make that decision or that she would die alone and wondering where we had gone. We've wracked our brains trying to figure out how and what to tell John. Whenever we leave from the hospital to go home he tells us that we are going home to be with the dog, he loved for her to go outside with him and would sit in his chair in the door and sign 'come' until she would go with him for whatever outside adventures he was having. It's so hard to explain to someone that their friend is old and tired and sick and dying and that we can't take her to the hospital and get her fixed, after all look how many times we've taken John to the hospital. Finally this morning Mark found the words and with no remorse or hesitation told John that Lucy was going to go and live with Jesus, with this John was good and then he and Lucy went outside to watch Mark dig the hole.

The watchers got bored well before the work was done, but as I would watch out the window I could see, could almost feel the grief of the digger. In our 14 years of marriage this is the second beloved dog that Mark has had to dig a grave for and this is no easy task, much harder than the roots and clay is the good-byes and this time knowing that there will be no other dog until John's health is more stable makes that good-bye even harder. Many nights that John has been in the hospital it's just been Mark and Lucy home and it's really just hard to imagine our home without her.

My sister and I have a running commentary that our dad's job in heaven is dog keeper, my dad loved dogs way beyond the normal amount of love that people have for dogs and there were very few times in our lives that our home and yard weren't inhabited by a dog or two or three or more. In my mind he now has one more, one whose hips no longer hurt, who can once more bound up stairs, knock pictures off the wall to chew their frames and maybe now she won't have to be afraid of thunderstorms or fireworks. Rest in Peace our friend, we miss you.


I don't know that I would actually call it a benefit to have a window broken out of the door to the garage, but I think John would.


This is John and I last week when he was admitted for a bit trying to figure out when/how his tugged on line would be replaced. The tiger came with a football player and a half dozen or so cheerleaders, I'm not sure John even realized that the tiger came with company at all, he only had eyes for the tiger and was not thrilled that they wanted him to stop looking at the tiger for his picture to be taken.


Have basement stairs, well it's recently been discovered that they are good for rolling balls down and scooting down and throwing things down, hmmmmm, suppose some day we will have to retrieve those balls and things from the basement, but the boy, well he's already been retrieved.


Thank you to a Looper friend's daughter for stickers! John was signing thank you when I took this picture and was not doing it again for the camera no matter how much I asked, he was way too interested in pasting stickers on things!


Sometimes when you play with the neighbor girls you get dirty, sometimes when you get dirty daddy brushes you off!

Even though the last few weeks have held lots of smiles and giggles and fun and learning for a little boy it's been a rough go too. Something is going on in his gut that is making it hard for him to get his g-tube feeds up where they belong. We know for a fact that John has poor motility in his gut and with no stomach muscles to help push things out he has a hard time keeping stuff moving in the proper direction. Yesterday we made a formula change hoping that it would help, so far it's interesting, now instead of puking 4 times a night every night he is not puking but is kinda gassy, hurts like heck for an hour or so before he poops and is pooping something that is green and weird but at least doesn't smell like roadkill the way that it does when he is suffering from intestinal viruses or has stopped absorbing stuff. He has an upper GI in Omaha on Tuesday and hopefully then we will find out what is going on or if we need to just continue the way we are with little changes that each hopefully make things better. As always we are doing this one day, one thing at a time and trusting in God's mercy to carry us through the next bit, He's never let us down.

Friday, September 11, 2009

2nd week of Kindergarten - Life Happens week

First news - Wyatt is headed back to his platoon today!!! He will graduate on time and is doing great! It's been so good to hear his voice, but we are so thrilled and thankful that he gets to go on with his training.


Well our second week of Kindergarten had one day of 'school' and the rest was life, still lots of watching Signing Times, but other than that we were wrapped up with a dying transmission, replacing a vehicle, then John's central line got tugged on a bit much and today he is going to have surgery to fix it. It's been a week, and it's weeks like this that make us positive that homeschool is the right decision and on the other hand wonder just how well we will do with it. We'll see how week three goes, surely it has to go better than this one as far as school work, but in the end I'm sure it will be another week of having fun, learning and being together, what more could we ask.






Thursday, September 10, 2009

Pray for Our Marine

This is my sister Tina, her husband Daniel, and their two sons, Wyatt (on the left) and Shorty (on the right).

Wyatt is in Marine Boot camp, less than a month from graduation, and currently in the hospital with cellulitis and staph in one leg. I got to talk to him for a few minutes this morning and he is in good spirits and wants nothing more than his leg to heal up to the point that he can go back to full duty before a week is up so that he won't be dropped and have to start over. This guy has had his wisdom teeth pulled, pneumonia, a twisted ankle, pinkeye and now this and still all he wants is to get to do his work to be a Marine. Please keep him in your prayers, and his family too, they are a long way away to have have their son and brother in the hospital, at least at this point they can talk to him a bit.

If you'd like to send this brave Marine recruit a get-well card contact me at and I will give his mailing address to you.

Thursday, September 3, 2009

Sweet and Silly


One of the benefits of shutting the tv off during the school week has been that John has found some of his old toys and remembered that he liked to play with them. His favorite is still the airplanes and dad takes him outside for those every day for a bit, but today he remembered how much fun the rice was and a even drove his trucks around for a bit.


John woke this morning puking again. Looks like we are combating his sluggish colon to get stuff moved on out the proper end of him and with a few adjustments he was finally starting to feel a bit better after lunch. Mark got a rare turn behind the camera while John was standing up behind my chair patting me on the head, running his hands through my hair and then kissing me on the cheek.


After supper and some tug of war with my apron strings John decided to sneak up behind dad's chair, dad got a few sweet pats and even a kiss on the cheek, but this was obviously reserved for dad!

Tomorrow we are back to the book work of Kindergarten, probably needing to run into town for a new medicine to see if we can't give John's colon a kick start, and then a new family tradition, pizza and a movie, I have a feeling it's going to be a lot of Tom and Jerry, at least until silly boy goes to bed.

Wednesday, September 2, 2009

New Socks and Good-bye Living Room Carpet



My first pair of socks from the leftover yarn from Mark's pair which still isn't done but hopefully will be soon. There are a few holes, some funkness with the heel that I've not solved yet, but hey they're done, or will be when I weave in the ends. John wore them all day and just loved them, tonight when I took them off he had nice toasty little feet :)


Another day of Kindergarten, another day of what shop class, home ec, I'm not sure but it was fun and the living room carpet is at the curb waiting for the trash guys to take it to a new home - the dump! We did get books read, some handwriting practice and math skills done and all in all had a really nice day.

John has recovered well from the allergy incident and his feeds are back up to 50ml/hr which is where they were before all this happened last weekend. Hopefully they will be able to climb steady from here and we will get rid of that darn central line before he gets another infection, we finished the last dose of cipro from the last infection last night and don't want to have to do more big honking antibiotics if we don't have to.

Tuesday, September 1, 2009

Good Enough

Did we get as much done today, nope we didn't, did we have fun with each other and have a good day, yep, sure did.



Tomorrow we'll get back to writing and math skills, for today there was fun with paint, dad, planes and plenty of time to play computer games - which I actually see John improving on every time he plays them. All in all a good day, the real meaning of gut ganuch (German for good enough, not in a poorly done way, but in a satisfied contented manor).

Monday, August 31, 2009

First Day of Kindergarten

It's hard to believe that John is finally at the age where it is time for us to start Kindergarten. We've worked on letters and numbers for a while now and read books to him forever, but here it is time to start 'formal' school, as you can tell we are not very good at 'formal'.


John's day started off with his normal routine bath and lots of giggling and throwing balls in the bathtub, PE and health.


Next was a run with dad, yes, John is armed with a bubble gun, after all dad needs all the motivation he can get. In the end dad took the bubble gun and used it as bait to keep John with him, yet more PE.


After breakfast John went out in the backyard with me and 'helped' hang out clothes. He had a great time zooming across the bumpy yard as fast as he could and then running back and forth under the laundry. In the process he jiggled the thingamajigs that hold his foot pedals loose and then proceeded to fall face first in the floor when we got in. Surely that counts for PE and health, lol, as you can see we are big on PE and health around here. So dad was fixing John's chair and John was helping, as you can see John is quite adept at the proper usage of tools, thus engineering is covered for the day, and by the way he lost a part and as of yet no one can find it, now if I could teach him to map that part out well then we would have hit geography but no, surely that's like a 4th grade subject. So John's chair now has one foot plate attached and he has learned to put both feet on there and stand up anyway, yep, more PE!


While dad was gone running some errands John and I actually did some academic Kindergarten work, several pages of Handwriting Without Tears and some early math skills with his Funtastic Frogs and a bit of fine motor activities with his chalkboard and chalk and then best of all sponges and water, what could be more fun than sponges and water. After that we decided it was time to go out in the yard and shoot John's planes around for a while, 10 times and then back to the old grindstone. Well shot number 5 landed on one side of the roof and the other plane landed on the other side of the roof on shot number 10, math right? When dad came home John was beside himself with joy that the planes were going to be gotten down, but even better was the big stick, actually a fishing pole of papa's but to John well...


...maybe some jousting? PE again, I'm sure.


After playing with the planes in the yard with dad a bit they came back in the house for another engineering class. While Mark was reinforcing the plane wings with 'craft sticks', John showed us what the real use of these are.


John's favorite kitchen helping job is to stand at the sink and fling the lettuce out of the sink full of water into the salad spinner, he's great at this! He even ate a few bites of lunch and then was down for a nap, sorta. Dad relented on our decision that there would be no tv during the school week (except for Signing Times) and let John lay down for what John calls a movie nap, I should have gotten a picture of him curled up in bed with his dvd player watching Tom and Jerry, but really I was mostly just glad that he was enjoying himself and decided to leave good enough alone.


After a nap and a bit more school work it was back outside to shoot some more planes. This one landed in the tree...


...John was thrilled!

For the day we managed to read aloud 5 books, John's choices of a selection that we picked out for him, Curious George, Curious George Goes to the Hospital, Cecily G and the 9 Monkeys, Harry and the Lady Next Door, and No Roses for Harry, do the amount of writing and math skills that we had set out to do, did lots of pe and engineering and even managed to paint for a while. All in all it was a great first day of Kindergarten, planning it to coincide with dad's day off worked out to be a perfect decision and gave us a really good head start. In the morning we start all over but for tonight...

Photobucket's lights out!

Friday, August 28, 2009

Allergies are a good thing?

Well they are when the other options are central line infections and out of control bacterial overgrowth. John has had a hacking cough and started puking in the night, for all the world it looked like allergies/cold but with a central line parked in his chest we couldn't just ignore this and so took him to see his pediatrician, Dr. Beal, in Columbia who is amazing! Hip hip hooray, it's allergies, now those still aren't funny but at least they aren't running at top speed to the er scary either. So tonight on the way home John was giggling and carrying on in the back seat even though he has thrown up a few more times, darn snot, and then when we got home and dad accidentally broke the already cracked garage door window John thought it was the funniest thing he'd ever seen. He was signing to me 'dad knock-knock break break break' and then went off giggling. What a silly little stinker!

Thursday, August 27, 2009

A Father's Love

All change, even good change, requires adjustment. Thirty one days of being away from home and it's taking us some time to settle back in. It's not just the things that have been left undone, or even the amount of stuff that comes home that we have to unpack (we're still working on those), or the fatigue level of everyone because none of us sleep as well apart and not at home as we all do when we are together and under our own roof (the fatigue is slowly going away). One of the hardest parts of this adjustment to watch, and I'm sure one of the hardest to go through, is also one of the steepest prices to pay for the separation that occurs when John needs to be in Omaha for health reasons and Mark needs to be here to take care of these people whom God has called him to serve.

The first night home in the middle of the night during John's normal waking up and needing to be changed and stuff came the screaming and the crying and the pleading for mommy. Mommy was exhausted and daddy was trying to let me rest while taking care of his little boy. Rejection hurts no matter how old one gets, and when I came around the corner to find out what in the world was going on there was a little boy just beside himself, tears running everywhere, signing mommy as loudly as he could with one hand, smacking Mark away with the other hand and screaming and crying at the top of his lungs as if he was in pain and scared all at the same time. I held his hand and caressed his head as daddy kept taking care of him, it only lasted maybe 10 minutes and John was back to sleep. It took much longer for his parents to fall back asleep. When morning came John was ready to get in the bath and play with dad, Mark spent a good part of yesterday finding opportunities for them to play and have fun together, and this morning in the dark when John awoke and Mark went in to check on him (I had taken the earlier time) I lay there and listened and there was no screaming, no real crying, and only a bit of fussing, no more than the normal level of fussing that a little boy does when his bleary eyed parents aren't reading his signs as fast and correctly as he desires. This morning when I rounded the corner to help John up (which is goofy because at night he can sit up and escape his bed, but in the morning needs help) he was holding tight to his little plastic basketball and signing daddy really big to make sure that I saw it. Now there are giggles and smiles and all seems better.

I am thankful for this man who is my husband and John's daddy, who even when he hurts because his little boy is not used to him being there every night persists, with gentleness and with love, in caring for his son and bringing him back around to that relationship that they had before the separation happened. Watching this unfold the past couple days has reminded me of the relationship that I have with my heavenly Father, who when I was rejecting Him, turning away, screaming that I wanted nothing to do with His kind of love and care persisted in offering those gifts, persisted in extending that love and care through every set of hands available until I too was brought around to see that this love is what is needed. It reminds me too that in my daily life I reject and complain and whine and yet my heavenly Father is faithfully there offering me His gifts, from air to breath, food to eat and people to love me which even the unbelievers get to the very body and blood from His Son that I might eat and live. I am thankful that He has persisted in loving me, a poor sinful woman, and will be happy to stand at the altar this Sunday and receive the gifts of life and salvation from my heavenly Father, through the hands of my little boys father. It is good to be home with my husband and pastor who teaches me God's Word of love and forgiveness not only through his sermons and direct teaching, but in the very way that he lives out life with our little boy and with me, even when it is he who is asking for that forgiveness it is I who learn more about love each day.

Friday, August 21, 2009

Four Wheelin and All Smiles

John has had rather a good day for hanging around the hospital here. Best of all was the time that he got to spend outside with Quintin and later with Q and Nya. John has now decided that sidewalks are optional and four wheelin is allowed, not sure how the maintenance people will feel about that but so far he's destroyed nothing and spread smiles far and wide! The weekend is upon us and outpatient is less long, drawn out and boring than in, but still the moments crawl by slowly, but at least they keep crawling and Tuesday is coming.

Thursday, August 20, 2009

Out Again

John had his line placed this morning and is outpatient again! The line is not the temporary one we expected but a broviac again, that's okay though, in the end it takes the same amount of work to put them in and they pull out just as easily so long as it is done quickly. This time the doctor put a local anesthetic under John skin at the line site and so he didn't need to have any pain medication later. The other news from the line placement is that John's veins look good and he hasn't lost any line sites. This is a huge big deal as John will inevitably need a central line now and again through the years. These lines can only be placed in certain places and there are times when those veins just can't take it anymore and close from the scar tissue, John's haven't done that and we are so very thankful.

So tonight we are outpatient, we have the sad job of telling Dad good-bye but we are so excited that we should be getting to go with him when he returns on Tuesday! Thanks again to everyone for their prayers and support, being parents is not an easy job for anyone, adding in frequent hospitalizations and the reality of life threatening illnesses surely doesn't make it easier, but knowing that there are family and friends that care for us, love us and keep us in their prayers and thoughts does.

Wednesday, August 19, 2009

Home...the plan

We are so excited any time that the 'h' word is even mentioned by doctors! Today the plan was set at John will have a temporary central line placed tomorrow, he's scheduled for noon but could go earlier or later of course. He should be out patient by tomorrow afternoon/evening and then get to go home after clinic on Tuesday. We are anxious, excited, and even a bit giddy about the prospect of going home so soon. Truthfully my mind is all a twirl with the thought and so is barely able to land on anything other.

Tuesday, August 18, 2009

A quick update... John is playing in hall with dad, ball and fellow backpack boy and I'm actually supposed to be paying bills, ugh. John and I had a great time staying with our friends this weekend, much to tell there but it will have to wait until I have more time. Sunday evening Birk rushed us to the hospital though as John was running a a fever. Long story short he has a central line infection, gram negative again. His fever got as high as 39.5 and the line was pulled, Cefepime added and he perked right up and was ready to play. John should be having a temporary central line placed on Thursday and then will be outpatient and maybe even headed home, much will depend on dad's ability to hang out until that decision is final, at least we should be headed home next week. His CO2 dropped during the night to 15 which is not good, but is repairable and just from the way he is acting I would say that it is already going up. I wanted to make sure to say a big thanks to the ladies from the Senior Center and the ladies from church who sent the big bag of toys - wow, you are awesome! John loves them and is having a great time playing with his little friend with them. Smiles all the way around!

Thursday, August 13, 2009

Just Wandering

Days with Mark gone are hard. He left for home yesterday afternoon and John was a little nutso for the rest of the day. Last night when I was putting him to bed he was ornery and mad acting and I finally just asked him if he missed daddy and was that what was wrong, he laid his head on my knee and just sobbed. So we are counting down the days, hours, more like the moments until daddy is back.

Today we did a good bit of wandering around and John was pretty good for most of it. He has been smiling and happy to see our friends here and enjoying riding around in his chair and pushing every available button, unfortunately including some of his mother's. But today one more time he decided that I was too slow, or too distracted, whatever, and by the time I caught up with him he was 3 hallways away. When this happens, it's really only happened twice, it's both scary and infuriating. He was soundly spanked and mom drove his chair all the way back to his room and then he had to be out of it for a couple hours before getting back in. He signed he was sorry over and over and I told him that I forgave him over and over and we both cried and still I just don't know what to tell him to make him realize that he just can't do this, so if someone reading this has some magic answer don't keep it to yourself, share it! After all that we still had a really good afternoon and evening and now he is snuggled in bed already asleep. He had labs done today and they were beautiful. His g-tube feeds are going up slowly but steadily and all looks well.

We are excited to have Charity and her family come to rescue us for the weekend. It always makes me a little sad that I don't have the capacity to haul John's chair with us, but still he is so excited to go and play with his friends and being rescued from the boredom of the hospital is such a huge gift. We look forward to attending worship on Sunday, our first time to be in church since the Sunday before surgery - I know it's only a few weeks but it seems like forever and leaves me again not understanding how people can just lay out of church most of the time and it not bother them.

I'll try to remember to take the camera with me and get pictures this weekend for a nice big Monday update. The mail that has come has been such a blessing, thanks to everyone for all that they send, mail, texts, emails, fb, etc., it all makes these days a little more bearable. Have a beautiful weekend!

Monday, August 10, 2009

The day with Dad!

Today I am getting to post the update on John and tell you about all the fun we had together.
Before I talk about the days events I want to share a picture and a little story from my time at home while John has been up in Omaha this past week.
my smoker
This is my flower pot smoker inspired by Alton Brown of "Good Eats" on the Food Network.

I have long enjoyed pulled pork as I grew up in North Carolina, but haven't really had the money to buy a good quality smoker to do this right. I saw this episode "Q" where AB constructed a smoker from large clay pots, and now I finally have one. It works great, I still have some learning to do to really do it right, but for about $100 with all new pieces instead of several hundreds for a Big Green Egg I am willing to figure things out. The Boston Butt turned out really good, and if I want this smoker is big enough to do more than one.

Our night was uneventful and we got to sleep in a little too. Later this morning we went outside to see Jim Fowler, the former partner of Marlin Perkins of Mutual of Omaha's Wild Kingdom fame from TV a long time ago. He still works for Mutual of Omaha and came to share some of the animals he still works with, though much younger folks do the handling.

John just loved to watch the strange and silly creatures and we almost got a front row seat on a real chase between predator and prey.
This is a ringtail lemur a native of Madagaskar. It used Jim as a tree and launching platform as he told about one of these ruining Johnny Carson's velvet coat on the Tonight Show.

This is another jungle creature, a nocturnal animal that is called a "night monkey"
night monkey
Of course also in this picture you see the observant little boy watching the creature hanging upside down and eating.

Here we have a little desert fox, a mouse chasing african creature that is quite interesting to look at.
desert fox

Finally we saw the most interesting of the animals, a cerval, a long legged small bodied cat that has greater jumping ability than Air Jordan.

First the coiling for the leap.
The cat leaps so high as to take birds out of the air.
As it lands you can see just how long this creature is.
As they were taking the cat back to its pen a small bunny jumped out of the flowerbeds and ran out in front of Jim Fowler's table. The cat spotted it and began to give chase. The handlers and the other adults were quick to handle the cat and chase the bunny away. John had a great time and we also got to see some of our friends who were also there to see the animals.

This afternoon the Childlife folks had another special treat for us. One of the young men that works in their office and a friend of his study magic tricks. They did a lot of card tricks, they also did some fork bending and a few slight of hand tricks. The young men really engaged all the kids and the adults. They even had me handle one of the forks that they twisted and bent with ease. It was a real one, not a flimsy trick piece. They also had John participate in a very well done card trick. They let us keep the card and one of the forks.
magic souvineers

All in all we had a pretty good day together, but we miss the mommy and while glad she has the chance to spend time with our friend we are looking forward to seeing her tomorrow.

Sunday, August 9, 2009

A Rainy Sunday Update

Now that I have the computer set up in our Lied (outpatient) room let me share a couple pictures that I had from home before we left.

Serious Computer Guy

What is he so intent on? The computer of course, what else. The child has learned to work the computer in ways that continue to impress me. He's always been pretty good at electronic things, but this has grown by leaps and bounds lately. Lol, as soon as he can read and type a little I think I'll let him start updating the blog a bit himself, really I probably will just find occasional updates and 'know' where they came from.

A Little Sewing

Before we left I was able to get a little sewing done and these are the hospital gowns for John's stay. Kids get so few choices in the hospital that I figured this would be nice for him to have some control over. Now that we are outpatient he still is wearing them just because he likes the fabric I guess, he's definitely got an opinion about which one he will wear when, opinionated, you bet, we love to see it!

Since the last update we did get a room upstairs, out of the PICU but still in patient. We hated it! Okay, the nurses were nice, the room was fine, but still we hated it. It's very hard when the nurses aren't doing anything more than what we do day in and day out and all we are doing is sitting and waiting. John had an upper GI done and all the contrast stopped about half way through his bowel and then came back up. I was scared this meant that he would need further surgery but Dr. Grant told us that he just needed more time to heal. John now has enough gut, weird sounding, that it just takes more time for it all to heal and wake up properly. Finally last Monday we were allowed to go outpatient, up until yesterday we did the exact same things, wait, watch, let his bowel rest and replace the fluids he lost. Ah, but it was outpatient, so while the medical stuff was the same the days are much different, they still get long and boring but they are less frustrating and less annoying because we have control over our schedule and how and when things get done. I will admit that it was rather tempting to use our new found freedom to do whatever the heck we wanted to with regards to how much John could drink, eat, do etc., but maturity and reason (don't know where those came from) set in and so we used our new found freedom to distract John from the unpleasantness of the rules under which he needed to live.

Playdoh Smasher

Lot's of laughs and playdoh time with dad was a great distraction.

I'm On It

We have watched more tv and played on the computer more than I would care to admit too, but some of it has been rather funny and at this point John had stood in front of the couch for a good half hour and then I don't know why but he decided that laying on the coffee table was a good option.

Toon Time

The purchase of a little dvd player has been a great investment. Not only does it help time go by in such places as ER's and hospital rooms, but John loves to run the thing himself and lounge, I have moments when I wonder just how close 5 is to teen, he sure reminds me of one at times.

Today we are anxiously waiting for dad to come back. The days that Mark is here fly by, the days that he is gone creep by so slow that I literally lose track of which one we are on. John's gut has healed rather nicely and he has been clamped (g-tube not open to drainage) for over 12 hours and is doing fantastic. We should easily be able to restart feeds on Tuesday after he is seen in clinic. He hasn't needed replacement fluids in over 24 hours and while I don't have lab numbers to prove that he is doing fine I can look in his face and watch his actions and tell you that he is doing great.

During these long days we have enjoyed visiting with friends in the hospital, John is fascinated with Quintin's sister, she has heelies and is silly and he is just positive that he should follow her wherever she goes. He wakes up in the morning asking me if we will see them again today, and most days we get to have lunch with them so it breaks up our days nicely and seems to entertain them too.

Before I leave this off I want to say, Papa, I'm sorry I've not been updating this as regularly as you would like, I'll try to do better, we think of you every day and I wish that you had a window into our room so that you could see what this goofy grandson of yours is up to, he's a nut and getting nuttier every day (how could he not with his mother). We love you and I'll try to get back to doing this on a regular basis!

Thank you everyone for the prayers, calls, texts, emails, mail, etc. These days are long, slow and boring and you help make them better. In the end though I am glad that they are boring because that means that everything is going fine, if slow. I was reminded again the other day that we are not here for ourselves, but to bring the comfort of Christ's love wherever we can. If you have room in your prayers please add a 20 something mom that is down the hall from us with her beautiful 2yo and 2 month old babies, they are fine, but her husband, her only family pretty much in this world is dying of cancer and barely even knows that they are here with him. We get to visit and talk to her as we go in and out of the hall here, John makes her smile, we do all we can to help. Look around you, you know someone who is hurting and in pain, that's why you are here, give them a hand, even if it's just a smile for their day, let Christ shine through you to the dark and broken world around you.