Home...

...it's a magical word that brings a smile just to think it, and when it's signed by a little boy a dozen times over again as he is leaving the hospital it brings smiles not only to the grateful parents that are going there but to all those who have had it signed to them too. It seems the the intestinal virus has left, and John has had enough time to heal, and is once again back up to his full feeds. He's lost a bit of weight, but surely none of the cute. We have to go back to Omaha for a checkup on Tuesday, but for today we are just relishing the feeling of being home!

4 French Fries and 2 Grapes

So much has happened since I last posted so let me see...

...We barely got home from Omaha and then headed down to Branson, Mo to visit with my mom, sister and her son's who were in from Montana for my nephew to go to a baseball camp. It was so great to see them! Living this distance away from both of our families gets a little lonely at times so getting to sit and visit, watch Shorty play baseball, play video games, watch Wyatt teach John how to give five like the big boys, laugh, giggle and talk, talk, talk felt so good. We only got to see them for a couple days, but we sure made up for our short time together by staying up late and giggling at every opportunity.

...We got home from Branson just in time for church and big church meetings here in town on Sunday at which we were told that the congregation intends to sell the parsonage, the house that they provide for us to live in, in an effort to remain financially viable for a little longer. While I don't begrudge the selling, I must admit that it makes me kinda sad to think about packing all of our stuff and not having a new state, new town, new everything to explore, that part usually makes up for the royal pain in the butt that moving is. Oh well, this too is in the Lord's hands and we are confident that He will work all things out for our good.

...Then we were off and running to St. Louis for some meetings that Mark needed to attend and a chance to shop at Trader Joe's. They are always fun, John loves to look at all the crazy stuff that they have hanging around and I think Mark and I are in love with TJ's Horseradish Humus.

...A day to hang out at home and then off again to Columbia for labs and such. Unfortunately John wasn't feeling so well so Dr. Rashmi checked him out and sure enough the kid has some kind of virus. A little rash on his face and his belly just not happy.

...The weekend was quiet, thank God, other than John just not feeling well.

...We left early for Omaha, John wasn't feeling tip top, but good enough to go and visit with the Baker's before we had to go for appointments. John is learning to say 'you're welcome' in response to 'thank you' and it was fun to watch him figuring out when to say it. Mark and Birk had a long cigar and visit and Charity and I got to chat too and the kids had a great time. It's always like a mini-vacation at their house and none of us are ready to part when the time comes, but it inevitably does.

...John's appointments, well let's say he's had better. His weight is okay, but his labs were starting to drift off kilter and so we spent 22 hours in the treatment room getting IV fluids and then he was feeling much better. During that time we got to visit with another IRP kid and his mom and that was fun. It's always nice to get to know the other families better and share experiences.

...We could tell by the time that we got home that John was already not feeling well again, and the puking in the middle of the night was a sure indication that the darn virus had not given up yet. Early Thursday morning we took John to Columbia and checked him into the hospital for bowel rest and IV fluids. Mark stayed with him last night and today and I'm making a nice roasted chicken to take for supper and then we'll trade places and Mark will come home for the weekend. John is doing fantastic. His belly is finally settling down for the first time since this whole thing started and thankfully his peripheral IV is holding and he's not having to get poked all the darn time. He is having labs every 12 hours, but they are just doing a finger stick and that crazy kid is so excited that they aren't going to be sticking a needle up his hand or foot again that when the lab person comes in he's excited and smiles and waves and hold out his hand and shows them which finger they should poke this time.

...So what does all this have to do with french fries and grapes. Well let me tell you our exciting news. When we stopped using John's central line he started playing with food more intentionally and when the darn thing got pulled out he started eating again. Just a bite here or there, and not on the days when he was puking because of the virus but today, hanging out with dad watching Stevie Ray Vaughn DVD's he ate 2 grapes for breakfast and 4 french fries for lunch, we are excited! He had eaten a few grapes at Charity's too and at every meal that he's felt good he's taken a bite of something, and all of this gives us hope that he's going to go back to eating and all discussions of feeding therapy can just cease.

...Well that gets the highlights in, hopefully things will settle down and I'll get more chance to post and John will get more chances to just be a little boy that lives at home, and we'll both be happier to just being under the same roof as dad!

Going Home

John is doing well, plans are being formulated, his line is getting pulled and we are headed home - Thank GOD! (meant in every reverent and thankful way that it can be said) I'll post more news as soon as I decompress enough to think ;)

Praying for Bugs...

...or actually the lack there of. John has been 2 days without any IV fluids, I have done everything short of lay on the floor and beg the docs to take out his temporary central line now. The poor nurse coordinator is in the middle between docs who want to see him make it through the weekend without needing to use the line before they pull it out and parents who are scared that he will end up needing to use it to get antibiotics to kill the bugs that attach to it over the weekend. That woman needs some kind of medal, or at least kevlar underpants, not that we've been purposively giving her a hard time, but just that it's hard to be caught in the middle between two sets of people who have such opposite and voraciously held opinions. So this weekend we sit and watch and pray. We pray that John's line will remain infection free until Monday morning when the poor-kevlar-underpants-deprived woman promised that she would get that line out of him if he made it through the weekend without needing it. We pray that John's docs are right and that this one last weekend won't cause him weeks upon weeks of setback because of yet another line infection. We pray for our own sanity and that we will remember that God is in charge of even the most minute details including microscopic critters that will hopefully remain in John's gut this weekend and not decide that it's time to vacation in his bloodstream. We pray for the kevlar-underpants-deprived woman that she will have a nice weekend with her family and not burn out in this job because she keeps getting caught in the middle between obstinate doctors and obstinate parents. We pray, and thankfully the Holy Spirit understands our prayers because honestly this weekend they will probably be a mish mash of gibberish and crazy, in the end we pray in thanksgiving that the God who created us knows that we are sinners full of doubt and fear and loves us so much that He sent His only Son to die and rise again to forgive us and to carry us through days of crazy headedness or surely we would be lost.

I Love You Dad!

John does this cute one handed 'I Love You' which usually has a finger pointed towards the intended person, tonight he was exhausted from playing all day but still when he heard daddy's voice on the phone he was signing 'Love You, Love You, Dad, Dad' and then blowing kisses. So this picture is for the most amazing dad from the most wonderful little boy who loves you so very much.

John is sound asleep already, he's to the point where he is feeling good enough that he doesn't want to take a nap in the afternoon and complains if I make him lay down for a while. His clinic appointment went great though and the nurse coordinator said our favorite 'h' word without me even asking. If John can continue on his current path then he can get his temporary central line pulled out on Tuesday and go home, wow that would be wonderful. Tonight he's only getting 200 mL of IV fluids, that's less than his standard fluid bolus that he gets when he is having issues, so if labs are good in the morning we will not run any IV fluids tomorrow night and then see how he does. The nurse was a little reluctant to send him home so quickly because once they pull the line it means that if he needs fluids he will have to have a peripheral IV placed, I let her know that Columbia has these wonderful ladies on their IV team who take such great care of John and it was a done deal provided John does well between now and then! Thanks Kim and Ellen!!

I'm looking forward to seeing what the morning brings and then in the afternoon Charity and her chicks are coming to see us and that will be fun! Of course the Scholastic Book Fair is here at the hospital tomorrow and Thursday so I am impressed with her bravery :)

4th and More!

Well I don't have a picture from the 4th of July, I totally forgot my camera but Charity will post some and I'll link to her blog when she does. I also don't have pictures of John playing with his Godcousins on Saturday, but Angie does and I'll link to her blog when she posts them.

I do however have this picture of



John sneaking out of bed yet again. Silly boy, he's gotten very good at this and is now even trying to get into the gait trainer himself. He's not managed that one yet but I'm sure it's closer than I think. He's also getting much, much quieter at this, and last night I didn't even realize he had slipped out of bed until I heard him in there attempting to reprogram his IV pump.

Mark came in on Thursday afternoon and John and I were both excited to see him. John enjoyed showing him the new tricks that he figured out. Like running down the hall and then picking his feet up and hanging in the gait trainer by his arms as it rolled along. He does this down ramps too and just loves it. He also showed his daddy how he can stick one finger in the hole on the water fountain and then hit the button and make water spray everywhere. I have to keep a close eye on him to keep him from doing this, because he thinks its way cool, and it doesn't help that it makes me giggle.

Friday we went out to Birk and Charity Baker's to celebrate the 4th of July. We had a wonderful time and John was enthralled with the whole thing. First it was fun to watch the other kids light smoke bombs and throw snap-n-pops but soon John was in on the act and throwing snap-n-pops too and carrying smoke bombs out to whoever would light another one. He loved the loud bangs and pops and light and smoke and by the time we carried him home he was exhausted and happy and covered with dirt and powder and whatever else he could find and looked thoroughly like a little boy that had a great time!

Saturday wasn't quite so good, I heard him cough a few times in the night and then Saturday morning we could tell that he just wasn't feeling as good. His lab numbers were kinda off but he still enjoyed getting to play with his Godparents and Godcousins who came to see him. He showed off how far he could walk and loved having Rachel show him books and sit by him. We had a great visit with our dear friends and after they were off back to the wilds of Wyoming we took John back to our room and hooked him up with some fluids to help him get over this snotty hump.

This morning John was back in his finest form, running down the halls, playing with the water fountains, turning circles in the cafeteria, and in general making his cheerful presence known everywhere he went. This evening he even asked to hold half of my sandwich and took a bite out of it - one bite, but for John that's pretty darn good especially in the hospital. He's sleeping peacefully tonight, maybe the snots are leaving, maybe not, but he seems to be compensating well and we are finally being able to get his g-tube feeds back up. I'm looking forward to what his labs are tomorrow and to find out how clinic goes on Tuesday.

Here's the last of the older posts that I had written out and finally gotten posted.

June 24th post: God's Mercy is Tangible.

June 21st post: Amazing Doctors, Big Dogs, Good Drugs, and a Wonderful Husband.

3 more weeks, more or less...

...is how long they figure that we'll be in Omaha. John had a temporary central line placed this morning because we just couldn't go through another poke for an IV, he's well over 20 heading to 30 pokes since last Thursday and that is just too much for a little boy. So we had to solemnly swear that we would not go home and that we would not leave town with this line, but everyone has great hope that this will get us home, broviac free, by the end of the month. We are back in our Lied room without having to spend the bulk of the day in the Treatment Center so I should soon be able to catch the blog up with all that's been going on. I've been writing out posts in a notebook, and notes here and there so there will be some back stuff but I will link to all of that from new posts. A couple days of real sleep and we should be back to normal, well at least as back to normal as we get :)

Here's the first older post.