And the count starts again.

John made it 6 months and 8 days without having to be hospitalized, a great streak for a little shortness! He's home again tonight but we had to take him to the ER yesterday as he's been fighting a little intestinal bug and finally needed some IV assistance. He's still fighting the bug but is tanked up on fluids and appears strong enough to continue the fight at home. He's snuggled in his bed right now, exhausted but home.

While we were at the hospital we did finally get an answer to how much John should weigh for his height. If I would have thought about this more I would have just done a BMI calculation for him myself, but didn't realize that's what they were basing the numbers off of today. So John's BMI right now is 13, for his height he needs to weigh 12 kilos which is about 4 more pounds than he currently weighs. Four pounds would look really good on him and well 4 pounds of muscle might be really hazardous to the dogs and furniture :)

We still have no news about the impending surgery, hopefully tomorrow. This is surely taxing the limited patience that I own and definitely stomping firmly on my last nerve but well I keep telling others that God's timing is perfect, if impossible to understand unless maybe in hindsight, and now I guess I need to take a bit of my own advice and continue to pray that God's will be done in this matter and wait, patiently, hmmmmmmm, does that have to be with a smile on my face, ah what the heck I might as well smile because not doing so won't help the situation.

The Lord's Day

Today at our church is Mark's last sermon in a series of Stewardship sermons, these have been particularly good. I came into the Lutheran church under a pastor who viewed stewardship as a series of papers to fill out on time, talent and definitely treasure and who preached to us about how if every one of the members were only receiving a welfare check, but tithed from it, then the church would have no financial crisis. In the course of this man being my pastor he said some things that I needed to hear, proving that God speaks even through sinful men, but when it came to stewardship stuff he was all LAW! Mark's sermons have been rather different, focused very much on who we are in Christ and how he has provided for us, and last week that our primary focus in life was to be making sure that those around us spent eternity in heaven with us. Now his sermon had a lot more than that too it, but remember I'm in the pew with a wiggly 3 1/2 yo and only catch so much.

I don't know how much of his sermons are sinking into the hearts of his parishoners, I'm hoping a lot. Because his churches are currently in a fiscal crisis there is an overwhelming emphasis put on money, good grief, even in the discussion of having Saturday services for those members who work on Sunday morning the cost of increased utilities had to come up. I'm hoping, no, actually I'm praying that a real heart for the mission of Christ will be born here. I believe it exists to some extent in the individual members, but sincerely believe that until his little town congregation sees it's primary purpose in life is to reach out to their community with the Gospel of Christ that they are truly in the last days of their being a church. Such a shame it would be to close the doors on this little congregation, it's not often that you find a group of people who can get along so well, nor a group of people who are so kind to one another. They have great strengths in these areas, hopefully with new leadership, not that the old leadership was bad, just that sometimes new eyes on a situation can make things better, hopefully with this new leadership they can find their way forwards to be a church that extends it's hand in help and love much more often than it extends it's hand in need.

It's also the Lord's Supper this morning and ordinarily we would not miss church, especially on this day, seems funny to be home, but John had a very rough day of it yesterday and needed all the rest he could get. Poor kid caught my cold/sinus infection and is certainly not feeling up to much of anything, we are hoping that he can get through this at home, if not, we'll at least we know what to do.

I wanted to share another of Mark's mom's recipes so that I can throw this scrap of paper away off my desk, lol, and because well her recipes are always good and good things should be shared. I have never made this one, but Mark remembers it fondly.

Omi's Chile

2 pounds hamburger, cooked and drained
2 cans 'Mexi' beans
2 tablespoons chili powder
3/4 teaspoon garlic
3/4 teaspoon paprika
1 cup day old coffee
1/2 teaspoon oregano
1/2 teaspoon cumin
1/2 cup chopped onion
1/4 teaspoon cayenne pepper
1 beef bullion cube with 1/4 cup water
1 can tomatoes
1 can tomato sauce

I have no directions with this recipe but would assume that it was put together much like any other chile recipe, well honestly, imo, with chile you can't go wrong by just putting everything in the pot together and letting it simmer long enough to thoroughly distribute the flavors and make sure the onions are tender. As for can sizes, there was nothing stated so I'm guessing the normal, what is it 8oz tomato sauce can, the little short one, and the 16 ounce can of tomatoes, you know the one that's a little bigger than a cambell's soup can :)

Omi's Apple Pie

Mark's mom was a wonderful cook, I've been meaning to share her recipes and thought I'd start with this one as it is tattered and torn laying here on my desk waiting to be shared.

Omi's Apple Pie

1/2 cup granulated sugar
1 teaspoon cinnamon
4 cups Granny Smith apples, sliced
1 cup all purpose flour
1/2 cup granulated sugar
1/2 cup brown sugar
1/2 cup butter
1 pie crust for a 9" pie pan

Place pie crust in 9" pie plate.

Mix 4 cups of apples with 1/2 cup sugar and 1 teaspoon cinnamon and place into crust.

Mix butter, brown sugar, flour and 1/2 cup granulated sugar in a bowl, sprinkle over apples and press down gently to form an upper crust.

Bake in a preheated 425 degree oven for 20 minutes, continue baking at 350 degrees for 40 minutes longer.

Well VBS is over...

...and John managed to make it to 3 days, or rather nights. That's not too bad for his first time. Dad went to the closing without us tonight because John was napping. He had big fun in the swimming pool this afternoon, and feasted on his Happy Meal on the way home and then was ready for nappage, hooray!

While the house was quiet and I should have been doing other things I decided that I'd play with the new photo-printer and print out the vacation pictures that are here on the blog and made John a little book about his vacation. He was thrilled. I put in the words and signs for "My Vacation" and about flying, having fun, and seeing his family and he was already working on the new signs and loved the pictures, especially the picture of Uncle Cute Nose blowing bubbles for him. I find it interesting that he is even more fascinated than usual with words when they have the pictures of the signs with them, I so wish that he could talk to me more because I'm sure he understands that they mean something and are important to him. One of these days he'll be talking more and I can't wait!

All John's therapists are now on board for 1x a week therapy, what do you know John behaves better and learns faster that way, sure makes us feel good about the decisions that we've made. Speech this week went very well, Miss Amy had new stuff for John to do and he was thrilled to play with her. PT with Miss Gertie went very well too, and she says that botox for his neck is immediately necessary because he's not currently using the full range of motion on his neck. Today Mr. Paul told us that he agreed with that and think that more tummy time is what is needed. Tummy time would be the big downfall that we have as parents, John hates it and well we aren't the best about making him do it. They have some strategies for us to try so we are going to give it another big effort, sigh, we'll see how it goes.

Library Stack

Well the stack of books that we have from the library is enormous, well at least big. Some friends from the Lutheran Homeschool List called Loopers made a bunch of recommendations and so we've been checking them out. To our delight all of them have been good, some have even hit John's favorite list, many more have hit our favorite list and all of them will surely be checked out repeatedly by us.

Good Night Gorilla by Peggy Rathmann is funny and entertaining. It's a book that has been used in speech therapy and one of my favorites.

One Wheel Wobbles by Carole Lexa Schaefer is a cute counting book that we are enjoying.

Piggy's Belly Button by Keith Faulkner has made it to John's favorite list, it's one of the few book that I've seen make him laugh out loud.

Tickle Octopus by Audrey and Don Wood is fun, another one that makes John laugh.

The Little Mouse, the Red Ripe Strawberry, and the Big Hungry Bear by Don and Audrey Wood, while I admit that I like this book better than John does, he likes it too and that makes it all the better.

McDuff's Wild Romp by Rosemary Wells and Susan Jeffers, this is our first time to read a McDuff book and I can see where the little dog is going to make more trips from the library to our home.

Tonka: Fire Truck to the Rescue by Ann Marin is a good firetruck book and John likes fire trucks in general so this one is working for us.

Quick as a Cricket by Audrey Wood is another of those books that has made John's favorite list, also one that makes me wish that I understood better what he was trying to tell me as he points and jabbers a lot at the pictures.

Full Moon Barnyard Dance by Carole Lexa Schaefer is cute and silly and delightful.

What do you do with a Kangaroo? by Mercer Mayer cracks me up, John likes it, but Mark and I find it hilarious.

We're Going on a Bear Hunt by Michael Rosen and Helen Oxenbury is another book that we first saw at speech therapy, that's on John's favorite list and that we just love, how could you not?

Double Trouble in Walla Walla by Andrew Clements is a fun romp with words and even though it's a bit mature for John he enjoys hearing us read it because it's just so silly.

Jubal's Wish by Audrey Wood is a delightful tale of a frog who wants the best for his friends. The colors are so vibrant and John just loves to tell us about the butterflies and flowers and such that make up the pages.

Sheep on a Ship by Nancy Shaw. Now Mark and I really enjoy these books, Sheep in a Jeep, and Sheep Take a Hike have all delighted us, John is not so thrilled with them for whatever reason, but then maybe they will grow on him as we like them enough to check them out again and again anyway.

Dinotopia: The World Beneath by James Gurney is way too old for John but I can see that it will be a favorite book as he grows older and would probably be of more interest to him now if he had an older sibling that read it or even one of his parents that really got into it, poor kid, he'll just have to wait.

VBS Week

Mark and I volunteered to teach the preschool VBS class at his country parish this year so that John could go and be involved. It's been fun, John has enjoyed getting to be around the other kids, and it's been pretty interesting to see what other 3's are like. All in all the concept that he is most behind in is understanding the function of a line, poor kid, we'd make him line up more at home but really the dogs don't get it either :)



Anyway he's been having a good time, the other kids are learning a bit of sign language as we go along and John is getting less shy each day so there is no telling what Friday will hold. The older girls, the 5's like to help him, and the older boys, well they are into his favorite game, run up and down the handicap ramp!

Perspectives

Life seems to be a continual string of events that are good or bad depending on the perspective that you see them at. Today was a St. Louis day, John had a check-up with both the GI department and nephrology, and we were once again reminded of the perspective of life that you see from the children's hospital.

John has lost weight again, but developmentally he continues to chug forward, so while it's not good, it isn't tragic either. We're adding in some extra calories to his night time formula and trying to encourage him to eat some more high calorie things. Seems kinda ironic in a household with adults who have been trying so hard to reduce calories, portions etc. The GI people are wondering if his weight is a part of his current kidney issue.

Ah the kidney issue, well John has hydronephrosis, basically his kidneys aren't able to rid themselves of all the urine that they make and some of it hangs out there. He's had it since he was born but lately it is worse and so all roads lead to surgery at the moment. Here's that perspective thing again though because John is right now the strongest that he has been in his life, he is 2 days shy of 6 months with no hospitalizations, a record for him, and he has his best chance to survive this big of a surgery right now. We will know next week exactly what surgery they are doing and when they are going to do it.

So today while we were at the hospital waiting to hear the news of what John's immediate future held, we passed a family with 2 little kids in strollers, and they stopped to talk to John because he was walking around in his gait trainer being oh so cute. A little later John and I were headed up to see the trains again and the dad from this family stopped to give John a sticker and talk to him again. A couple hours later John was in the bathroom with his dad getting his clothes changed, and the dad from this family came over to ask where he was, was he okay, and to bring him a Kit Kat. He wanted to tell me that his little boy was nearly 2 and has a syndrome that renders him unable to walk even as much as John does, and he was so happy to see another little guy out there doing so well and said that he would pray for John, and of course we will remember his little guy in our prayers too.

If the day comes that you are ever tempted to throw yourself a pity party go and visit the children's hospital for a while, you will find there a perspective on life that few other places show. While there is sickness, and sadness and those things of course, you will find a living example of faith, and people who despite the circumstances of their lives or their children's lives find a reason to smile and learn to enjoy the moments that they have with their kids. At the very beginning of John's life a very wise pastor reminded us that we were not at the hospital only to take care of our son, but to bring the hope of Christ to the people there. That is a perspective that we try to hold onto, and when it slips someone comes by to remind us!

We've been out of the hospital long enough that it's hard to think about John having to go back in, but when we remember that we will be there not only for ourselves, we find the strength to prepare and ultimately the strength to go.