Rainy Days are Better With Friends

John is spending this rainy day playing and resting, he caught a nasty cold on his way out of the hospital door and so is snotty and not feeling great, but still he's got smiles and as always he's got his friends. I was playing with a new shirt pattern for me and working with some scrap fabric and it was too much fun to share that fabric with my buddy and his friends.

Alas, Pictures

Gotta love that monkey! I hadn't realized that I had pictures in the camera, this is from before John got sick 2 times a go.



As is this one. John loves, loves, loves to play in the sink. He's fallen out of his chair doing this once, but still he doesn't care, he just loves to play with the water and whatever spoons or pans or glasses he can reach.



This is a few days before he got sick this last time. He is helping dad, by which I mean that dad is trying to figure out why the refrigerator is blowing hot air and every time that dad really gets busy in there John turns on the vacuum cleaner to help him ;)



This is from today. One of John's other favorite things to do is blow fire, we are now on our second or third box of birthday candles, he only gets to do this with dad and he was very determined that my picture taking didn't interfere with that.



We have actually seen John's eye hand coordination get better and his hand steadiness improve with this, might as well learn something in a fun way when you can.



And lastly for the day, a playdoh head. In the hospital John loved for me to make hats and masks and such out of playdoh for him tigers and so today I made one for him and then he needed a picture taken of it. He's so silly!

Home...

...and I have the camera out hoping that I'll remember to get some pictures today as we get settled back in and caught up. John is currently in the living room playing with his toys and watching Curious George, Mark is gone to the hospital with someone who is having his knee replaced and I am wondering from place to place trying to remember what I do with all this stuff :)

A Single Hour

And which of you by being anxious can add a single hour to his span of life? Matthew 6:27

Each day of last week we were blessed to be reading this verse in the midst of the Gospel lesson for Sunday, yesterday. In my head it has morphed two ways. And which of you by being anxious can add a single hour to your child's span of life? And which of you by being anxious can subtract a single hour from your child's hospitalization?

We have learned a lot this hospitalization. Each time that John has been sick has been a learning experience, not only about illness, and such but even more so a growing in faith and a growing together as a family.

This illness has brought us many lessons on viruses and what can be done to prevent them and how prevalent they are. It has also brought us lessons on true friendship, not just Mark's and mine that continues to grow but also how much it means to us to have Charity and Angie and other's through on-line relationships and in person too who reach out to us, not just to make sure that we are okay but to share their lives with us. It has brought us lessons on patience, and judging by how little patience we had before John was born and how much more we could certainly use, there are many more lessons to learn in this area. It has afforded us the time to talk deeply about life and how precious it is and how fleeting it is at the same time. In all of this and through all of this it has given us moments of deep heart wrenching sorrow and boundless soaring joy.

Despite not always feeling great, having to be poked periodically for blood draws and IV's, not getting enough rest just due to hospital schedules we have watched John grow and learn and change during this time in the hospital. If you are a Velveteen Rabbit fan, you will understand when I say that during this stay John's tigers have joined monkey in becoming real. I have been amazed to watch them develop both personality and relationships. The tigers are the first to jump up and dance whenever music is heard, and quickly they find monkey to hold them and dance with them. Monkey is always there for a cuddle and chat and while he might be the first to go overboard when all animals are jumping ship, he is the last to remain upright sitting and watching John play and having a book read to him. Monkey is a great Curious George fan and always has to watch at least a partial episode, yet it is the tigers who must be awake for Tom and Jerry and who often sign or sword fight along with the characters. Sometimes monkey and sometimes tiger, but always someone, has to go potty, and often stinks or needs a wipe or tries to reprogram John's pumps while they are parked in the bathroom within reach. Both tigers and monkeys need shirts, pants, diapers and much to the detriment of their fur diaper cream, stickers, tape and bandaids. Monkey spent one evening wearing a tourniquet and getting periodic IV's and then hugging John afterwards. I have watched these animals sign to each other, sign to nursing staff and to me and Mark, the tigers are even learning to talk using John's AET, some combination of monkey and tigers always says prayers at every meal and at night, get their teeth brushed, help John brush his teeth, take medication and help to dispense it too. Even one time early on when John was still having many accidents without being able to make it to the potty, it was monkey who stunk and made that mess, not John.

We seem to be nearing the end of another hospitalization, for anyone who is keeping track you know that we have spent most of June, July and now August either in the hospital, traveling to doctors or what have you and will understand that we are all looking forward to some time at home. We do go to Omaha next Tuesday, and while that isn't really much fun we are looking forward to the time we will get to spend with Charity and her family on Monday. We had thought/hoped that John would come home on Saturday, we were looking forward to attending church together, but God's timing is His own and the time that it takes for little boys to heal is His also.

I found it interesting that John had a completely different, more reverential attitude last night when Mark was conducting basically a shut-in worship service for us than he does during regular night time prayers. John is fascinated with the Lord's Supper and each time we try to explain a little more, sure is hard to do when he can't really ask us questions and we are trying to anticipate what he would want to know. His eyes got really big last night when daddy was closing the box that his communion set is in, it instantly made me wonder if he thought that Mark was shutting Jesus up in that box, as John has been told many times that the Lord's Supper is Jesus. I guess we just keep talking to him and answering things as we can figure out/anticipate that he needs/wants to know them.

John looked fantastic when I left last night, he was running at 85ml/hr tolerating both his g-tube feeds and his baking soda dosages and Mark tells me that he is looking just as great this morning at 90ml/hr. He has to get to 95ml/hr to go home and from the looks of it he should be able to do that some time this afternoon. He lost his IV last night when I was leaving and they've not had to put another one in, so he is getting to take a bath this morning in the big bathtub in the shower room, after dad wipes it out with anti-microbial wipes that is. We will be stopping on the way home for copious amounts of bleach, hand sanitizer and lysol or I might go in early and pick those things up first. I feel some germaphobia creeping in, or is that just bugs.

And which of you by being anxious can add a single hour to his span of life? Matthew 6:27 And which of you by using bleach, hand sanitizer, good handwashing techniques and lysol can keep your child from getting sick one time? I'm not sure, but it's worth a try. Semi-paranoid mommy.

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.

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.

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 ...