Tuesday, July 31, 2007

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.

Sunday, July 29, 2007

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 :)

Saturday, July 28, 2007

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.

Friday, July 27, 2007

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.

Tuesday, July 24, 2007

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!

Friday, July 20, 2007


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.

Tuesday, July 17, 2007

Lay off the broccoli...

...but how about the dog snacks? John's been dealing with a lot of gas issues lately, his pediatrician assured us that adult diets create adult issues and that little guys with no stomach muscles can't handle gassy food, his advice, tell the kid to lay off the broccoli! Well okay, but what about the dog snacks? Tonight he gave Maggie her piece of jerky treat and then took a big old bite out of the next piece and handed the remainder to Lucy. He sat there and smiled while he chewed the dog jerky, Mark laughed and told me it's a boy thing, okay, but if the kid has barking problems he gets to explain it to the pediatrician this time :)

Sunday, July 15, 2007

Dog Trees

I've been reading a new book Keys to Raising a Deaf Child by Virginia Frazier-Maiwald and Lenore M Williams, M.A. I wish I would have found this book a long time ago, but am thankful for it now, and would recommend it HIGHLY to anyone who finds out that their child is deaf or hard of hearing. It's the most pro-child book I've read and cuts through all the different theories on how best to raise a deaf child and makes the information accessible to a hearing parent who is looking to give their deaf child the very best chance in life that they can.

Now having said that I will say that it is not necessarily a pro-homeschool book, but I don't really find that to be a drawback. It contains information that I've not seen anywhere else in such a succinct and straightforward manner. Everything from the pros and cons of each of the ideas on educating deaf children to a frank discussion on what it takes for a deaf kid to learn language and how vitally important that is to the child. John currently attends the Moog School for the Deaf in Columbia, Mo., we are blessed to have them and thankful that they are there. We are also blessed that in this oral only school John has a therapist who sees the need for him to have sign language and other communication options, who sees that language is of the primary importance and oral can come when it comes.

One of the things emphasized in this book is that for a deaf child to learn English it has got to be spoken to them, if they have amplified residual hearing, but that they have also got to have it signed correctly for them too. As any older person who is new to hearing loss and hearing aids will tell you, even the best most expensive hearing aids don't replace good working ears. Some speech is lost and according to this book what is the most lost is endings and the ability to differentiate between similar sounding words.

We've known for a while that John has a hard time with 'big' and 'pig' and can tell them in context now, but on their own he's guessing unless you are enunciating very, very well. What we didn't realize until a couple days ago was how hard it was for him to pick up the ending of the words. We had a good chuckle over our lesson, when he started telling us that he wanted to 'open' the cabinet to get out the 'dog trees'. It took me a second to realize what was going on, that he was after the 'dog treats', but since he can't quite hear the ending for the word and has no sign for 'treat' it's still 'dog trees'. Now the dogs don't care what you call them, at least Maggie is ready for them all the time, but really we want John to have a better command of the English language than that. So today we found that there was no SEE or ASL word for 'treat' and taught him to call them 'dog snacks' he was fine with this for the moment, but it sure showed us how intricate these language issues are going to be.

Thankfully John is a very smart little boy, he craves language like women crave chocolate and would like nothing better than for us to sit and talk, read, work on signs, and such with him. This has shown us that we are going to have to take some further steps around here to insure that he keeps up with language comprehension and so now we are imposing a 'sign language only time' for while John is down for his naps, okay other than when we have company. This was suggested to us by some savvy deaf-ed homeschooling mommies as a way to make us practice both our expressive and receptive sign skills and it's certainly time for mom and dad to get with the program and make sure that we can sign fluently so that John will learn to do so too! Oh and if you're wondering why we decided to do it during John's naps, well mom and dad are ssslllooooowwwwww and will have to finger spell stuff because their current sign vocab is not any bigger than John's, and we don't want to overly frustrate the toddler, besides he needs to keep learning to use his hearing too, at least that's the excuse I'm using at the moment :)

Friday, July 13, 2007

Just a Swimming!

Today was John's first day back in swim therapy and he did great! Another therapist glad to see him continue advancing even without being in therapy for a month, that's just music to our ears. John had a great time in the pool, even though he was already exhausted when he got to it, a 7:15pm therapy time is a wee late for a shortness. But he was still all smiles and giggles.

We got his new braces today, and let him run all over Lowe's while we window shopped all the cool things we'd love to put in a house some day. Enjoying the time at my sister's out in the country has left us dreaming of someday getting to do the same thing, someday.

Yesterday was awful, we even spent yesterday evening discussing how soon we were going to be taking John to the hospital, little silly man pulled through the evening on his own, and had a great day today. Tomorrow he gets to run around the church while we have the church cleaning, I'm not sure this is going to be exactly helpful, but it will certainly be entertainment :)

Wednesday, July 11, 2007

Back to School

With the end of vacation the return of therapy was bound to come and today was the day. John did amazingly well, actually considering that he didn't feel good, threw up on the way there, and spent a good bit of it yawning he did GREAT! He remembered everything in speech therapy and didn't go backwards one bit. That's what we were hoping to see, we've spent no real time drilling his work while we were gone and now that we see he hasn't gone backwards feel even more confident in our choice to make therapy 1x a week, and spend the rest of the time getting to read books, go for walks, play and get to be a little boy. Oh we'll sneak some work in there now and again, we really want to up the amount of sign that Mark and I know and John loves to color and play with his flash cards and stuff but all in all we're looking at a much more relaxed fall, phew!


Vacation was awesome, we're glad to be home, but so glad we went too!

This vacation had lots of firsts in it for John: first time he rode in a commercial plane, first time he flew without being sick and strapped down filled with IV's, first time to meet Aunt Tina, Uncle Dan, Wyatt and Shorty (my sister and her family), first 4-wheeler ride, first time to pet a chicken, first time to pet a cow, first time to pet a horse and first time to ride one, first 4th of July with hearing aids and the first time that he went for 3 weeks without a single therapist or doctor visit of any kind, and that's just the ones that I can think of off the top of my head.

We started out with firsts right out the gate and John enjoyed every one of them. He loved the bus ride from the airport parking to the plane, had a great time running around in the airport, and even did okay when they patted him down and checked to make sure that he wasn't smuggling bombs onto the plane. There was a little deaf girl waiting for her plane too and it's the first time that he's seen someone close to his height sign, he was fascinated and we were amazed at how fast she was and how normal all of this seemed to her family and to John and us too. John loved showing us the plane that was waiting, and walking right up to the door of it, he wasn't too wild about being strapped in his seatbelt but as the plane started to take off he got a huge smile on his face and told us 'plane go up' and enjoyed it greatly. He loved the layover in Denver, well okay, he loved the moving walkways, but wasn't too thrilled with having to get back on the plane. Take off was fun, after that he decided it was time for a nap, mommy and daddy needed one too, so it worked out great.

John was still sound asleep when the plane landed, when we got off the plane and got our luggage and waited for Grandma and Aunt Tina to come get us. He was still sound asleep when we walked outside to get in the van but then he was awake, at least somewhat.

It was so great to see my family. Mom comes to visit every fall, but I hadn't seen Tina since she had come this direction over 4 years ago and Mark and I had not been back to Montana since 2001 when he got the call to come here to Missouri. It's been way too long, but the wait was worth it and the vacation was perfect.

The very first day John met his cousin Shorty he got to play in the tractor

He thought this was pretty cool. He loved getting to pet the animals and meet Wyatt and Uncle Dan too!

This was our favorite kind of vacation, one where just hung out and visited. We mostly stayed at Tina's and played video games, visited and petted animals, but we went down to see Mom's office and she came to hang out with us too. John loved it when the big guys would let him hang out with them and through the visit he could be found with one cousin or the other or with Uncle Dan whenever he had the chance.

Tina tried to teach him to call Uncle Dan 'Uncle Big Nose' but Dan quickly turned it around and to this day whenever John see's his picture he calls him 'Uncle Cute Nose'. John loved getting to hang out with Uncle Cute Nose at every opportunity and learned cool new hand signs to show little girls at church and make them giggle. He often would ask us 'ride motorcycle Uncle cute nose' and of course the answer was 'yes' and off he would go on the 4-wheeler.

While the boys were gone to church camp John spent his time looking for them and hanging out with us. He loved exploring Grandmas office, and the grocery store that was down the walk. There's nothing like new places to explore, and of course everyone is always amazed that he is so little and yet such a presence.

The visit was great for catching up, and Mark and I enjoyed the family, country life and the 4-wheelers too. The last time we saw the boys they were both quite shorter than me, this time Wyatt towers above Mark and while Shorty isn't taller than Mark he's certainly taller than me. We were really impressed with them, at 15 and 16 they have turned into quite the nice young men and not only did they enjoy spending time with their wee cousin but with us too. We had a great time enjoying the family bonds again and look forward to seeing them again next summer when they travel this way for Shorty's baseball camp in Branson.

The last couple days that we were there we tried to squeeze all the fun in that we could. Including a cool 4-wheeler ride for me, with Wyatt running along side, riding on the back, and then giving me a ride back, it was cool and there is no way that I would have driven it that fast with him on the back, but wow!

One of the things that we all wanted to do was let John ride the horse, funny the kid was not nearly as impressed with that as he was the 4-wheeler rides.

Waiting for the horse with Aunt Tina.

Nice Butterscotch, let me just pet you a bit.

Okay bareback is cool, but there isn't enough stuff to hang on up here.

Hmmmmm, saddle, that's an improvement.

But really couldn't we just go ride the 4-wheeler again?

One of John's favorite things to do on vacation was shop in Aunt Tina's walk in pantry, especially for dog treats. By the time we left I think even Digger was hoping that the kid would lay off the treats.

4th of July was spent at my sister's pastor's house less than a mile from where the town of Florence shoots off it's professional fireworks show. This is the first time that John has heard fireworks and we were worried that with the professional show so close and the HUGE fireworks that we had gotten from the reservation that he would be scared and not like them, or only like them after he pulled his hearing aids out. He loved running with the kids until it got dark and then as the first boom hit and the first firework went off he followed it up, waved at it and smiled big. The first half hour of the show he was just enraptured and loved every one of them, then he decided that he was hungry and needed more food, so the last half he spent on a chair with a cup of chips shoveling them in his face as fast as he could. Once in a while a particularly loud or close firework would go off and he'd look up from his chips and wave and smile at it and then back to the chips he went. The evening ended with him getting to ride with dad in an 18-wheeler back to Aunt Tina's. He was amazed and impressed, so I'm told, but by the time I got back there to see him he was on the couch devouring yet another bag of chips, what a piglet!

Wyatt and Shorty had a great time with Wyatt's new bottle rocket pistol and the other various things they invented from there, and Shorty proved that you can shoot yourself in the face with a bottle rocket and still have fun, we were way entertained and their Grandpa would have been proud!

Saying goodbye is always hard for me. Especially when it has been so long since we got to visit and we'll have to wait another year to see them again. But the good-byes inevitably come. The boys got up for one last picture with John, and to say good bye to us

being boys they really didn't get why their silly aunt kept crying and then their mom started too, oh well they were tears of joy for the great time that we had and tears of we'll miss you til next year.