Tuesday, September 16, 2008

Getting Ready for Vacation

I can't believe it's less than a week before we pull out of the driveway headed to North Carolina. We're all looking forward to having fun visiting family and friends, but we're trying to squeeze every last thing we can in here before we leave the house.


John has been working pretty hard on his letters. He can sign more of them all the time and is now pointing them out everywhere we go. At home we have him working on recognizing all of them, using playdoh, probably one of my favorite parts of homeschool is that we can find a way to have fun and learn too!

He's been doing great and his labs yesterday were pretty good. He had so much fun at therapy, and learned to use a new computer program, and made a pretty cute paper plate duck. He's getting so much better at following directions and being precise with things that he does, like putting glue in just the right place instead of just wherever. We brought home some projects for him to work on while we are on vacation and then heading to Omaha before we get back to Columbia for therapy.

Well there's much sewing left to be done, not to mention laundry and packing and those kinda things before we get out of here, so I leave you with a picture of John waving and we'll be back in October, hopefully refreshed and ready to get back to 'normal' life.


Thursday, September 11, 2008

Wednesday, September 10, 2008

The Value of Friends

John asked us several times on the way to Nebraska if we were going to see 'friends' and we told him repeatedly that we were indeed going to do so. When we got to Birk and Charity's town he got really excited and when we pulled into their driveway he was practically levitating out of his carseat signing 'friends' as fast as his fingers could go and higher and higher so that he was quickly signing 'friends' over his head, I'm guessing this would be volume.

He had a great time playing with the kids, was very excited to see them the next morning and was really happy to hear that after his doctor's appointment he was going to get to come back and play with them again.

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The value of friends ... PRICELESS!!!

John's appointment was okay, just okay. The doctor and dietician were concerned that John had lost 1.5 kilos since the 1st of July, that's about 3.3 pounds, about 10% of John's body weight, not a good thing. They were a little relieved when we explained how much time John had been without g-tube feeds due to intestinal viruses, nearly 20 days of that time was with IV fluids only, or very little else than IV fluids. So we have this month to see if he will pick some of that weight back up and stay well, if not, well I don't know but I can't imagine that it's going to be a pretty or enjoyable conversation at that point. Of course this month we are going to North Carolina for a wedding of a family friend and to see Mark's family and of course John has a bad cold, and of course he started throwing up yesterday. We think the throwing up is due to the cold, we hope. We are under orders to call immediately if we have to shut John's normal g-tube feeds off for any reason, thankfully so far we've not had to call yet. We're sincerely hoping that we don't have to make that phone call even once. We are a little comforted in knowing that John has already picked up a bit of weight since his last virus, and that he hasn't lost quite 1.5 kilos because the start weight was high due to over-hydration and belly full of yuck, but still he's lost at least 1 kilo and probably 1.25. We are most comforted in knowing that day in and day out John is baptized, John is a beloved child of Christ, and that His will is perfect for John and us too. It is this comfort that lets us sleep at night and enjoy good times with friends and with our little boy no matter what the days may bring!

Monday, September 8, 2008


We are getting ready and leaving this morning for Nebraska! Mark has a shut-in to visit so our trip includes a ferry ride, and then of course since we're going to be that close to Columbia we are heading in to the library, yes, a family of nerds, I know, I know. Anyway then we are headed to Charity's house, we taught John the sign for friends yesterday and explained that we were going to see Charity, Birk and their kids and they are friends, so this morning every time he looks at us he smiles hugely, signs friends, and is ready to GO NOW NOW NOW!!!!!

Saturday, September 6, 2008

Awards and Meme's

Blogging is fun! I've always been a compulsive writer, lists, thoughts, whatever, even Mark knows that packing for me must include a notebook and pen because at some point in the vacation, hospital stay, trip, whatever I'm going to NEED to write something down. Blogging is a great outlet for that, it lets me share John's life and our lives with others who are interested and it lets me fill my need to write. Knowing that people read and appreciate this is a bonus, a fun bonus at that. So I link you to another fun blog of a mommy who writes about her kids and life Kids Say the Darndest Things one that I always enjoy reading. Yesterday she honored me with an award, that's fun too, I always loved ribbons during school, as an adult those opportunities don't come along often, so they should be enjoyed when they do!


Thank you!

While I was over there reading I noticed that she had a fun meme (blogger term that means list of things to share on your blog, as close as I can figure out) and I thought it would be fun to do that too.

The AmusedMomma named this the READING MEME and while she says it's not a flashy name and can be changed, I like it and will leave it as is. Like any good game Meme's come with rules and here are the rules for this one: You can answer, or not, whichever questions appeal to you. Let's leave The Bible out of this, we'll assume you like being in The Word. Please let me know in the comments section that you're participating so I can jump over to your blog and read your answers. Share with whomever you want.

Who is your favorite fictional author?

I actually have 3, Dean Koontz, Tony Hillerman, and Diane Mott Davidson, I'm always checking for and anxiously awaiting a new book from them. Really what do they do with their time, surely they could write faster ;)

What is your favorite fictional book?

Watchers by Dean Koontz, I've read it a good half dozen times, have a first edition hard back in the book shelf and will probably read it again soon. If you've only ever seen the movie of this book you have no idea what you are missing, themes of life, love and the importance of not playing God.

Who is your favorite non-fictional author?

It would have to be Gene Edward Vieth. His writing is easy to read, always informative, and often leads me to other books and authors that I like to.

What is your favorite non-fictional book?

My current favorite is Why I Am a Lutheran by Daniel Preus, I've read it twice so far and it speaks to so many reasons that I myself am a Lutheran, but Vieth's Spirituality of the Cross is so close that they switch back and forth.

What is your favorite kind of poetry?

Zany, short or long, doesn't really matter, I just like unexpected, silly, stuff.

Who is your favorite poet?

It must be Ogden Nash because that is one of the poets names that comes immediately to mind. I never even heard of him until I picked up Helen Ferris's Favorite Poems Old and New Selected for Boys and Girls. Now I have the last line of one of the Ogden Nash poems stuck permanently in my head 'if it's a panther, don't anther.' Got to love zany.

What is your favorite poem?

Hand's down it has to be Quothe the Raven Nevermore by Edgar Allen Poe. One of my beloved uncles had to memorize this in school and so at every family gathering at some point he would start in and say the whole thing and I would be rolling, not just because the poem is good but because the presentation was funny and amazing and well it's just one of my favorite memories of him. I must say that I love parodies of this poem too and the best of those that I've seen is Fry Some More a Good Eats episode done by Alton Brown that is hilarious.

What is the longest book you've read?

By number of pages it would have to be The Stand by Stephen King which I've actually read a few times, every time I read it though I either have pneumonia or bronchitis when I start it or before I finish it, figures, but if I finish up Don Quixote that I'm reading now it will certainly beat that one not only by pages but by sheer number of words on each page too and I shouldn't have to catch a respiratory virus to finish it, I hope.

What is the last book you read for yourself (not for the kids!)?

Handling the Word of Truth by John Pless.

What book(s) are you currently reading?

Don Quixote by Cervantes, Tales from Shakespeare by Charles Lamb and Concordia: The Lutheran Confessions, of course all of these will be laid aside as soon as Koontz, Hillerman or Davidson release another book, but those only take a day or two and then I'll be back to these.

List up to three books you intend to read by the end of the year.

Luther on Vocation by Gustaf Wingren, Ministering to the Sick an old Concordia Publishing House book by William A. Lauterbach that I've snitched out of my husbands library and In the Face of God by Michael Horton, which I started earlier this year and just haven't finished yet. Can you tell that I'm trying to fortify the theological fluff that is in my head?

Share with us about a book you read that you didn't want to but ended up enjoying.

The Old Man and the Sea by Ernest Hemingway. It was assigned reading in high school and I really enjoyed it, enough so that I still have my copy sitting on the bookshelf.

Share with us about a book that you thought you'd like and ended up hating.

The Lost World by Michael Crichton. I LOVED Jurassic Park, actually it's second only to Watchers on my list of favorites and of books that I've read repeatedly, so I thought I would love this one too. Yikes, this is the WORST book that I have ever read, it's like Crichton was held hostage by feminists and had to write a book to satisfy them so that they would release him. The movie is decent, but the book is horrid. Actually we borrowed this book from friends to read and I wanted to buy a copy for myself so that I could personally rip the pages out and burn them, yikes, it stinks.

Share with us if you have a favorite series of books.

Another toss up for me. Prior to the 7th book of the Harry Potter series coming out I would have said that it was Lord of the Rings, hands down, no contest, but with the 7th book of Harry Potter, well it's a tie and I look forward to rereading both series for many years to come and can't wait until John is old enough to read them to him too.

Name your favorite genre of books.

It would have to be mystery/thriller, honestly for me to like a book there has to be a good vs. evil struggle that is believable and draws you in. Good must win in the end, because after all I'm reading for enjoyment and I like a happy ending. I don't really care if the setting is historical, modern or fantasy so long as the story is good and the characters are so real that they walk and talk in my head. At least these are the books that I love to pick up and read in one sitting if possible and rarely do they last more than two days around here.

Well if you've read this far, I should give you a reward but instead I'll reward you with a tidbit of news about John. His cold is still hanging in there, but so is he and he's doing well, he even slept through the whole night last night. He's evidently decided that he likes milk, which of course makes him very, very, very sick, so when he asked for it yesterday we told him that he had to drink special milk that wouldn't make him sick and poured him a cup of his formula, much to our surprise he liked it and this morning asked for milk again. Hmmmmm, the kid always intrigues me.

Friday, September 5, 2008


Btw, John is feeling better today, good enough to play his favorite game - roll off the couch, and also good enough to laugh and giggle and carry on. The cold seems to have moved to his chest, which makes his laughing and giggling and little more breathy than normal, but the smiles were adorable despite the snot.

Thursday, September 4, 2008

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.

Tuesday, September 2, 2008

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!


...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 :)

Monday, September 1, 2008

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.