Wednesday, December 31, 2008

Happy New Year!


We've been to worship, partied a little bit, and now it's time for little boys to go to bed, but before that we needed one last 2008 picture. Happy New Year and may God bless you and keep you throughout all of it.

Friday, December 26, 2008

Big Boys and Wii Arms

Among John's presents yesterday were a few this-boy-is-growing-up presents, a remote switch so that he can turn a lamp off and on from his bed (thanks to as-seen-on-tv), a lamp for the little bookcase by his bed, an alarm clock with big digital numbers so that he can start to learn that he can leave his light on for 1 hour, or 30 minutes or whatever after he is put to bed, and a small shelf that hangs above his bed that he can reach that holds a few books for him. This morning he was sitting in bed with his light on reading/looking at a book waiting patiently for his daddy to come get him for his bath. The big boy just keeps getting bigger every day, not just in behavior, but in stature also. On Christmas eve as we were standing together in church I was holding his hands as normal, at the full extension of my arms. I've known for a while that he was not fully or even mostly extending his own arms to hold my hands, not until Christmas Eve did I realize just how much taller he had gotten, when he took my hand and rested his whole face in there at first I wondered why he was trying to wipe his snotty nose in my hand, then I realized hey, that's his chin, holy cow this kid is getting taller. Why did he do this, I haven't a clue, it was silly at a moment when his mommy needed some silly, sweet how God provides even those things that we need.

The grown-ups are enjoying their present too. Mark and I are trying to purchase the parsonage here, we have been given a can't-miss-deal on the price of it, but even at that it is taking everything financially that we have and so this year we purchased no presents for each other and only a very few for John from us. My sweet and generous mom sent 4 boxes for us in the box that contained John's most favoritest Playdoh. We didn't have a clue what was in the boxes, except for the first which by it's packaging was obviously a game for the DS that she had given me for Christmas several years back. We were shocked, amazed, delighted and speechless when we unwrapped a new Wii and some components for the grown-ups. Now this is very much a first-Christmas-after for us, comparable to the first Christmas after my dad died, and the first one after Mark's mom died, a friend described miscarriage as a bitter pill to swallow, it is by far the bitterest we have tasted yet. So while we were still into Christmas for the celebration of the coming of Christ, and made sure that John enjoyed his Christmas, both Eve with church celebrations and Day with presents, games and toys, for us there was/is a missing joy that we know will eventually return but is certainly not here now. Last night after we put John to bed we decided to give the Wii a real run, we had played a bit through the day, but really it takes too much floor space and too much in-front-of-the-tv to have John in the floor while you are doing this. We played tennis, we shot pool, played badmitton, and every other game on the thing and my favorite we rode the cows and knocked down the scarecrows, more importantly we laughed, we smiled, we giggled, and we carried on without tears or sadness into the wee hours of the morning. Well this morning we have Wii arms, mine are more tired and sore than Mark's, but it certainly reminds me of days gone by when the skin between my thumb and first finger was bruised from the Atari joystick (mom and dad saved us by sending us to bed so they could play, hmmmm, their hands were red the next day too) and who could ever forget Nintendo thumbs once you've had them, ouch, but really you can play through the pain ;) Moreover we are looking forward to playing again after John is in bed tonight and think we might have even found some things that John can play on here too. Thanks mom for both the Wii Arms and the Wii smiles!

Thursday, December 25, 2008

Merry Christmas!

Can you hear the excitement?




Learning to sit up by himself came just in time for Christmas, as the Christmas tree threw him on the floor a couple times as he headed in for more presents.



Playdoh! All presents were loved and squealed over, but the Playdoh had to be shown to the monkey and the doll, and they were excited too!





Tuesday, December 23, 2008

5 Years Old!

I thought I better get this birthday post in here before it's time for a Christmas one. We took John up to the Baker's house in Nebraska to celebrate turning 5, and what a celebration it was. He had the best time, playing with the kids, unwrapping presents, putting out candles with the candle snuffer, and just everything was so much fun for him, and us too! My mom got John a DVD-camcorder for his birthday so that he could watch his friends and his birthday party on the way home, he loved this and has watched it many times since. Unfortunately this means that we didn't take as many still pictures and I can't figure out how to upload video from the little DVD to the computer. So I share these pictures with you:


This one was actually taken just before we left for John's birthday, the sweater he is wearing is the sweater that Mark's Auntie Gerry made for him when he was a little boy. John loves this sweater and he has worn it many places. I was initially worried that he would be so hard on it that it would fall apart, but then decided that he was enjoying it too much to worry about it and well it's made a lot tougher than I thought, because it is holding up great.


Here John is opening up his birthday presents, he just loves the little girl that is sitting there with him and she helped him with all of his presents, and then helped him play with them too. Now he really enjoys the rest of the Baker children too, but he and Chick #3 have the very best time together. While we were there she played the piano for him and let him set next to her and play too. John's love for music just seems to grow and grow and after we are through the purchase of our house this year we will begin looking for him a piano for home, one that we can afford and one that can hold it's tune.

I've been amazed at what this 5th year of John's life has brought, as I look back over the posts and think back through the year it's been quite the roller coaster ride as all of his years have been, but this one is ending on such high notes. We see God's gracious hand in John's life everyday and not the least of that is just the good health that he is enjoying right now. John is scribbling on everything, asserting his independence at every turn, playing with toys and in ways that he's never done before, getting to be more helpful and even just more fun and caring, he's growing up in front of our eyes and we are so very blessed to watch and enjoy this.

At the moment he is sitting in the living room cutting the wooden birthday cake that the Baker's got him for his birthday and watching Peter Pan. He now has the patience to watch a whole movie, well okay a whole movie that has a good deal of action in it. We have just been thrilled to watch all the changes this year and we're looking forward to what the next year brings.

As for mom and dad we are doing better each day. I have learned not to cry in front of John, it just breaks his heart, but Mark still lets me borrow a shoulder when I need it. I was able to fully miscarry on my own last Monday so don't have to make decisions about d&c's and such things. Grief is grief, we are so thankful for the loved ones who have called and written, the cards, hugs and love from friends have been comforting and the friends who have opened their hearts and shared their own journey through this grief with us has helped immeasurably. As my body heals and I am able to do more things it helps my mind find some peace. Looking forward is both scary and exciting. I have found a doctor in Columbia who works with women with PCOS so that if God should so bless us again I am less likely to miscarry. We find that we want, hope and plan with God's grace, peace and strength to walk a narrow road between hoping and preparing as best we can for another pregnancy and not obsessing and falling back into the bitter mindset of infertility that we/I once carried.

Well one last note about our sweet John and I'll let this post loose on the internet and go back to some baking for Christmas eve. As I was typing the last paragraph and getting myself close to tears yet again, I heard the sound of paper ripping in the living room. Low and behold the son whom I love so very much was in there opening a Christmas present. Silly boy, this is the first year that he's been really excited about them and he just couldn't help himself anymore. Well the present wasn't his, turkey. So the present is wrapped back up, thankfully he did just enough damage to get my attention and not so much as to make it obvious what the present is, because it's mine and Mark's from my mom and I just don't want to know yet.

Have a Merry Christmas, and I'll post John's Christmas antics a few days or so afterward.

Thursday, December 18, 2008


I got to looking back through old posts to find out when John had come out of the hospital this summer, September the 2nd, 107 days ago. WOW! Back when John was 3 we got very close to 100 days of no hospital, I think we made it to 96 or something like that and then he was back in again. This 107 days is the longest stretch that John has ever been out of the hospital in his life, now that is something to celebrate and to thank God for. Oh, and I'll get to a birthday post pretty soon.

Sunday, December 7, 2008

Sit Up and Cheer

These are not in chronological order of the evening, but you have to see this...


...this is John sitting up by himself! We cheered, we hollered, and his monkey and doll danced. This is the first time in his whole life that John has sat up from laying down all by himself. What a gift!!!!


Okay, to start at the beginning, John decided that tonight we needed to do garland. First of course he had to do his Mr. T goes Christmas Bling imitation and put the garland on himself and then after we got them all untangled we could put them onto the tree.


Of course after the garland went on the tree then it was the monkey's turn. We have a rotating Christmas tree stand, the smartest after Christmas buy we've ever made, and so John is fascinated with the tree even more so because it moves.


Just a bit after he finished sticking his doll in the tree he started trying to climb in there himself. He was a little disappointed that he was too heavy to ride in the tree, but had a great time giving monkey and doll rides.

Saturday, December 6, 2008

St. Nicholas Day

Mark has many fond memories of celebrating St. Nicholas day as a child and so we have found ways to have this celebration be part of our family tradition too. Since John's very first St. Nicholas day we have read him this book about the real St. Nick.

Also this day we usually put up and decorate our Christmas tree. John is a Christmas tree fanatic and so no matter what else is going on in life it's worth it to get the tree up for his enjoyment. This year he decided he needed to help...


...and then I'm sure he's heard us tell him that he's our gift from God enough that he thinks he belongs under the tree, well okay maybe he just needed to get under there anyway...


Finally this evening when we were getting ready for Advent services John just needed to wear daddy's extra collar...


...after all it does match his gloves ;)

We still don't have the decorations on the tree, but it's up and lit and we decided that we need to take it a little slower this year, hauling one big box of Christmas stuff up the stairs a day and putting those things out just seems much more doable than bringing up the whole she-bang in one fell swoop.

Honestly I was afraid this was going to be a little much Christmas cheer for me at this moment in time, but I found it was helpful, not to say that there aren't a few tears on the newly fluffed tree limbs (fluffing is my job) or that there weren't a few shed at the Advent service and here and there throughout the day, but all in all it was a better day than I thought it would be and John's enjoyment of the tree and festivities helped a lot. By God's grace we continue and have even been able to keep up our one and only Advent tradition, well besides going to church, the singing of From Heaven Above to Earth I Come each night, John loves to look at the book and tonight he was warbling something for each of the pages. He always makes his mommy smile.

Monday, December 1, 2008

Sadness and Joy

This is Mark, this evening I have the privilege of posting the events of our family life together.

This morning we went to see John's new audiologist, another friendly and helpful lady who is taking care of John's hearing aids, and we made new molds of the inside of his ears to make better fitting ear pieces as John continues to grow in all ways. This was a normal and good part of the day.

Following this we went to see the OB-Gyn for Gina, for we have been celebrating the life that was growing within her for the past week. Yet our joy in this was to be short for now, and yet will be, by God's grace in Christ, eternal. The child she was carrying within her for the past 8-9 weeks left us to return to the Lord who had given this precious little one life. There is no way to know if our baby was a boy or girl, yet we are not going to let this child go unnamed and unremembered. We have chosen to name the baby Katherine, in honor of Gina's mom who, through all the joy and now sorrow, has been there for us with wisdom, encouragement, and hope, even when we had none.

While this is a sad and heart-breaking day it has come also with notes of that eternal joy that I wrote above. When we told John that the baby we had been praying for all week was now in heaven, he signed 'baby with Jesus' and smiled at us. Such profound and simple faith speaks volumes. Even as tears fall, threatening to short out the keyboard, I can be as confident as King David who, while grieving the loss of his unnamed son, said, 'he will not come back to me, I will go to him.' In this way I can commend Katherine into the gracious hands of her loving Savior, Jesus Christ, knowing that we shall meet face to face and eye to eye someday and share the love eternally that we had hoped to here in this life. And if at that point we find that our baby girl is a baby boy I am sure he will forgive us and still love us.

Saturday, November 29, 2008

New Wheels


Not too very long after I posted the Happy Thanksgiving post we got a phone call from the chair place telling us that John's power chair would be here at 2pm. We had gotten a letter the week before telling us that it had been ordered and would be in within the next 4 weeks, so of course we didn't have any ramps built. Mark quickly built 3 ramps to get John's chair in the house and the adventure has been on ever since.

I was very impressed with John, he's only gotten to drive a power chair 3 times, and those were only chairs that were similar to this one, not exactly the same, and the last time that he had driven one was months and months ago. No more had his little bottom been planted in the seat than he reached over and turned it on and was ready to drive. The chair needed a few adjustments and you can see that he has a wrench in his hand and was helping.

An hour or so of adjustment making and a trip up the 3 new ramps that his daddy built and he was ready to terrorize, uh I mean, drive in the house. He is very good at this and is getting better each time he is in it, but that doesn't mean that he's exactly getting safe driving awards yet. We did realize that the chair was heavy enough and had enough torgue that we can't push it and it can certainly push many other things, but he's getting better and there hasn't been any permanent damage to chair, structures, pedestrians or pooches.

It is giving him the freedom that we hoped for and as he gets better at driving it that will only increase. Before the chair John would be playing computer, or something and get done and have to holler and fuss to get our attention to move him, with the chair he can come and get us and tell us that he's ready for something else to do, or even go and find that something else himself. He is still getting in his gait trainer and walking, and holding our hands and walking through the house, and scooting around too, but this adds a whole other dimension to his mobility.


And of course today was new haircut day for my favorite guys, so I could resist showing them off!

Wednesday, November 26, 2008

Happy Thanksgiving!

We find this year that we have many things to be thankful for...


...good friends.

John's godparents came to visit this month and what a great time we had. It was so nice to get to visit, to enjoy seeing how grown up our sweet goddaughter is now, and just be together for a while. John had a great time with the kids here and he was sad to see them leave. Somehow our house is just much quieter without the godcousins swirling around, with no trains in the kitchen and no little girls that like to play playdoh for hours and no little boys running hither and yon. We look forward to getting to go and see them, and whenever they get back this way, it's always fun to be together.


...a little boy who is doing great and getting bigger and better all the time.

We just got home from John's check-up in Omaha yesterday. I must say that even with the good news of his appointment the very best part of any trip to Nebraska is staying with the Baker's. We will be returning in a couple weeks just to hang out and play at their house for the weekend of John's birthday - he will be so excited, and so will we!

John's appointment news is very good. He has actually gained weight, about .25 kilos, not as much as anyone would like him to gain, but it's in the right direction and the docs/team have a plan to help him gain more. These kids are so much trial and error, but it's comforting to know that the experts have more ideas and listen to ours too. John's height portion of the growth chart is still nearly a straight line up since arriving in Omaha, he's now 38 inches tall, his weight on the other hand looks like a hook, having gone up and now sliding back down, hopefully it will turn more into a roller coaster soon! We are going to be trying prune juice to manage the constipation, as both they and we want him off the Miralax, the kid just doesn't need more drugs in his body if we can avoid them. At any rate John is doing so well that he doesn't have another appointment for 6 weeks and actually gets to have labs done every other week this time.

...a new life to celebrate and share.

We found out last week why I have been so tired that I can't manage to do much, including update the blog, I'm pregnant. It feels surreal to write that down and it mean me, Mark and I have been married for almost 14 years and never thought that we'd ever see a positive pregnancy test but last week the test went positive so fast I never even had a chance to set it down. We did find a high-risk pregnancy ob/gyn in Columbia, I'm 42 and overweight, our first appointment with the nurse is on Monday and then we see the doctor on the 17th of December. We are guessing that the baby should be due in early July, but are looking forward to the first ultrasound so that we can see if our guess is good or off. I never realized that my whole body would feel pregnant, I also never realized what tired really meant. We have told John that he is going to be a big brother, and I'm not sure just how much he gets it, his first reaction was 'baby play playdoh', can't wait until we can show him his new baby brother or sister. We are excited, shocked, amazed and most of all thankful that God has blessed us with this little life.

Friday, October 31, 2008

Can You See It Now Dad?

Tonight while John and I were in his room reading books his daddy called while on the road coming home from visiting members in the hospital and so I put Mark on speaker phone so John could hear him too. After John waved 'hi' to him, and signed to him that he loved him, then he started rapidly signing for his daddy to read the book to him and grabbed up the phone and turned it so that daddy could 'see' the book through the phone screen. For probably the next 5 minutes or so it was my job to change the pages and at each change of page John would hold the phone over the new pages, making sure to get it really close to the most interesting parts of the pictures so that his daddy could see.

After that it was time for John and I to start getting supper together, and so my little helper came into the kitchen with me. He supervised while I cut the veggies, helped measure things out, but then he really helped with the sauteing of the veggies for the chicken rice soup.


John helps to scramble eggs almost every morning, so when I asked him to please stir the veggies so that I could get other things done in the kitchen he took the job quite seriously and did a fantastic job at it. I was so impressed. He would pull himself up with the oven handle, stand and stir for a bit, then sit down and watch the pan, when it got really bubbly he would stand up and stir it again. We had perfectly sauteed veggies and I really only intervened a time or two - I am constantly amazed at how much actual help John is.

John has been learning to sign the common table prayer, and I've noticed that since he's started that he's been stringing more signs together and is even making up his own little sentences. Things that he used to have us spell out in books for him he now points to the letters and spells them out for us. He makes sure that his monkey or whichever animal is nearby sees all the pictures in his books, and often uses their hands to sign about what is going on in the book. I sometimes worry that we aren't doing enough formal school, but really he is learning every day and so I guess we are just going to keep doing what we are doing.

One of the things that we like to do is play games, Hi Ho Cherry O is one of John's favorites, and this time it was Raggedy Andy's job to help play.




Tonight for Halloween, or the Great Chocolate Harvest as it is commonly called on the Loopers list, John walked around in the driveway giving out candy to every kid that came by. This is his first time to be home and feeling good for Halloween ever and he really enjoyed getting to see the kids in the costumes and liked giving them candy. Of course he had a great time eating some of it himself! After he had eaten one small Hershey bar he wanted another and I told him that he could have it tomorrow. He started into the house, took one look at his father, and stuffed tomorrow's candy bar inside of his coat, as if to hide it. I don't think we've laughed so hard in a long time.

Monday, October 27, 2008

Walking with one crutch...

...and a bit of help. Who was doing that? Why John of course. The crutch was teeny tiny, and yet way too tall for him, but he immediately understood exactly what to do with it and needed only a little balance help and support on the other side where the other crutch belongs. His new physical therapist wholeheartedly agrees with one of our favorite old pt's who is adamant that John will eventually walk unassisted. For now we are looking forward to next month when he will get to try out a walker that has less support than his gait trainer, then transition eventually to two crutches and who knows when but it sure looks like he will eventually walk free. I cannot adequately describe how exciting that is to us.

I do have pictures and other things to post and will hopefully get myself in here to do it sometime this week. I've been spending every spare moment sewing, sewing, sewing, and John has nice new sheets, pillow cases, bed pads and pj pants to show for it, and still needs some long sleeve pj shirts, play clothes, clothes to go to town in and church clothes too, it's so very cool that everything from last year has high water legs and too short of arms.

Thanks so much for keeping us in your prayers and thoughts, these are amazing days and so much fun to watch.

Thursday, October 9, 2008

Ah Vacation


Prior to leaving the guys needed a pre-vacation haircut, as you can tell John has had his and now it was going to be dad's turn, but we couldn't resist a picture before they traded places.

This was the very first time that we got to travel to North Carolina to visit with Mark's family and not have to tour the inside of any hospitals. John did great, he threw up one time on the way there and then had the time of his life. He's still asking about the cousins.


With two days of driving to do he had to find ways to entertain himself in the back seat. He was a cheerful traveler and learned lots of new things like how to throw things from the back seat to the front, how to reach everything in the back seat and move it, open it, pitch it, play with it or eat it. We read lots of books, watched some movies, enjoyed some music and finally made it to Papa's house.




John absolutely loved getting to play with his cousins. He is the second youngest of 12 cousins, the oldest one is 13 and the youngest is 2. He had so much fun racing around in circles with David and would stop in front of him so that David could ram him, boys are certainly boys. He did later come off the porch at a bad angle and take a header on the concrete but it didn't take long and he was back out racing in circles again.

Mark and I had a very enjoyable game of Risk with some of the older cousins, and the girls kicked butt, if we hadn't had to stop the game to go eat I'm sure that Savannah would have taken over the world.

We stayed most of the time with Mark's next older brother and his delightful wife and family. It was so nice to have so much time to visit and get to know them better, and John was so excited to be staying in a house with 6 cousins. He woke up most mornings at 5 or 6, signing to me 'wake-up cousins, wake-up cousins' as fast as his little fingers and hands could sign it. He learned to bump down all the stairs on his bottom and was so excited to play with the kids.

We are always impressed to be around so many kids and so many nice kids at that, it was a pleasure to be in the midst of family.

The reason for the timing of this visit was a close family wedding that Mark was preaching at. The wedding went well, the reception was wild, or rather John was wild at the reception as he seemed to think that he owned the dance floor. He was a bit timid getting out there to start with, but soon was running in circles and figure eights and laughing and smiling and making sure that there wasn't room out there on the dance floor for adults.


One last picture, I could have taken a million but I was too busy having fun too. This is the 3 youngest cousins, all boys, one with more fashion sense than the others, all having a good time.

So many things happened, and so much fun was had it's nearly impossible to list all of it, suffice it to say that we are looking forward to our next visit!

Friday, October 3, 2008

We're Home!

John had a great vacation, so did we, and I'll get pictures and news and everything here pretty soon, maybe even today :)

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.

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 ...