Thursday, August 28, 2008

A Happy Soul

"I can't believe how good he looks", "He has really gotten big", "I'm so impressed with how well he is doing".

Yep, all about John. And they are right, he is doing great, this seems to be another virus and he is recovering quickly now and could be home this weekend some time and probably won't need any additional time in Ohama. He constantly amazes me. The only time that I have seen him down, seen him scared or sad was at the moment that he was getting a new IV and one time when I was crying yet again and he was trying to figure out what was wrong with me. Thank you everyone for your prayers, on this day we enjoy spending another day with our favorite little boy, and he is enjoying spending it with dad. Last I heard they were listening to music, playing games and getting ready to go to the playroom.

I am home trying to get some things caught up and might even get to sew for a minute. All in all we are faring well. God always uses all things for the good of those who love Him,and in this He has given Mark and I a lot of time to talk about life and life under the cross. It has also given us time to reflect on the great gift of time that we have been given with John and how blessed we are to get to be the parents of our wonderful little boy.

I will have to remember to get some new pictures of John to share here, it's been a while. He's doing so much more, he's been able to stand up at the table and play trains in the play room, he's strong enough to push all the buttons on the electronic art work on the hospital walls, he's learning to use his augmentative communication device, and he's even answered 'yes' on several occasions without having to be prompted.

I'll end this with the quote that I was thinking of as I picked out the title. Even fighting a germ, this boy has been gifted with a happy soul.

"A sad soul will kill you quicker, far quicker, than a germ" a quote from John Steinbeck.

Monday, August 25, 2008

Christ Have Mercy

I used that title for two reasons.

First John is sick again, although he looks good and is playful and happy his gut is not working right and we don't know how long or what it is going to take to get it back up and running correctly again. We also don't know the exact cause of this, but then I'm not sure that exact causes are ever really known. He's in the hospital in Columbia, will most likely be on TPN before the day is out, will likely have a central line placed again soon and I fully expect him to be in Omaha before the week is out and wouldn't be surprised to see him there for a while, Christ have mercy.

Second it's the name of Matthew Harrison's new book, if you know who I'm talking about then you know what book I'm talking about, it's fantastic, the best ever missions book that I've read, the best of several kinds of books that I've read. Mark is going to write a review of it eventually, it's going to take while, see 1st paragraph, and when he does I'll post a link to it. You won't be disappointed with the book, it's Christ centered, pastoral, practical without compromising, filled to the brim with Luther, and clear plain Lutheran teachings. It could easily set on your bookshelf between Why I am a Lutheran and your copy of the Confessions and be right at home. Be warned though, it's not a sitting kind of book, while the volume itself will sit politely it's not going to let you do so.

I am home long enough to do a load of laundry and get a few things done and then back to the hospital. Thank you for your prayers for John and for us, we continue to pray God's will be done, Christ have mercy, and that in our own struggles, worries, and fears that we never lose sight of those around us who need a Word of comfort and mercy.

Thursday, August 14, 2008

The Road to Freedom

John's check-up on Tuesday was very good. We met the doctor who has taken over the IRP program in Omaha and we really like him, just like we were told we would ;) We have watched through John's years that every change of doctor, done either by choice or force, has been a change for the better. This time we got to go from one great doctor to another and since we are confident that God works all things together for the good of those that love Him we are confident that this change is going to be a positive one!

The best part of any trip to Omaha is spent with friends. This time we just got to visit with the Baker's long enough to have a delicious supper, hang out and visit until the kids needed to go to bed and then headed into Omaha as John's appointments were very early. If you've ever thought that you couldn't eat greens, well you should try Charity's bacon fried kale, it convinced Mark and I both that we could learn to love these greens. No one wanted to quit visiting and so by the time their exhausted kids went to bed and our exhausted kid was loaded into the jeep it was quite late.

John slept all the way to Omaha, he was still asleep when dad released him from his car seat and gently set him and his monkey down into a wheel chair. He barely stirred as we walked through the hospital and never woke even when we put him in bed and slept peacefully through the night. John has never been able to do this, it seemed like such a normal kid thing, as Mark and I both have memories of being little and going to sleep in one place and waking up somewhere else, often miles and miles from where we had been.

We were so amazed to be out of clinic at 9:15am, usually an 8:30am appointment means that we are out of clinic sometime before noon, so this was really a shocker. A few errands in town, an uneventful trip home, a few errands in Marshall and we were thankfully home again to get ready to leave the next morning.

Yesterday was John's appointment at Seating Clinic, a clinic especially developed for just exactly what it sounds like. It addresses car seats, special chairs, wheel chairs and the like and yesterday we were there to talk about John's power chair. After seeing John in the chair again everyone was convinced that he was definitely cognitively capable of handling a power chair, then it was a decision of what chair would best serve him. We had been looking at a chair that lowers the seat pretty close to the ground, but wanting to wait until the updated version came out that had the blue tooth technology capabilities. After watching John and thinking about his mobility limitations we all came to the conclusion that it wouldn't really be any easier or harder for him to get into a regular chair than it would be for him to get into a lowered chair, lol, he's short enough that even with the lowered chair he will have to stand up to get into it. So we were able to start the process for him to have a power chair with all the technological advantages that we wanted him to have and not have to wait until later next year some time for him to get it. If all goes well he should have it in 90 days from yesterday, which gives Mark and I time to get a chair carrier for the back of the jeep. Thankfully we don't have to get a new vehicle right now!

I have actually been the hold out on getting John a chair, I've been worried that it will make him want to walk less. Then I got to really thinking about what a power chair would mean, it would mean that he could enjoy the whole zoo, under his own power, getting to choose which thing he looks at for a long time and which he goes past quickly. More than that though it would mean that he could move around the house by his own determination, not having to cry/fuss/holler from the other room that someone needed to come and get him, and not having to sit where mom and dad chose, or just where he could get to from our chosen spot. He could even go to church and come home under his own power, with me walking with him of course. He could even go all the way down to the park to play. The ramifications of a power chair are amazing me at the moment. The rehab doctor who is ordering it told us that the biggest change we will see is that no longer will we always have to accommodate our lives to John, but that he will learn to accommodate his life to ours. I see what she means in the little practical day to day things that we do, and I can't wait to see what neat things John decides to do on his own road to freedom!

Oh and here is a picture of his ticket to ride ...

Thursday, August 7, 2008

Home...'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!

Friday, August 1, 2008

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!