The Long Short Story

So many people have been asking about Jackson's health. Some are coming to the story late, and it's a long story. I have decided to move everything here for those who are curious. For those of you that don't know the "history", this is the place to start. It will be brief, but informative. (I hope)

In July Jackson was taken to the ER when our Family Doc thought he might be having an appendicitis (due to the pain he was in on his right side). Instead we would discover he was in DKA (Diabetic Keto-acidosis), his liver was enlarged, liver enzymes were slightly elevated, and his electrolytes were low. We are admitted over night. The DKA was cleared and we were sent home late the next day. Everything chalked up to Diabetes and a need for better control. The Endo appointment at the start of school would show that control had improved.

Over the next few months we would watch him go through what I can only call a cycle. Approximately every 5 weeks we would go from "perfectly normal", to "sick". At first it lasted about 24 hours, then 48. It left as fast as it came. He would start to experience more and more heartburn. As the Endo's (Diabetes Docs) were not overly concerned, Family Docs and Hospital Docs wouldn't be either. So meds were just given to treat the heartburn. They would quickly become ineffective. We would still be told that better diabetic control was needed and all would resolve itself. However we were seeing the opposite, as he got control, his symptoms would get worse. We were mostly managing symptoms at home at this point.

Fast forward to November, the week before Thanksgiving. Symptoms have changed. While weak in an "episode", now he is dizzy and can't walk without assistance. It's almost as if he is "drunk". He went to bed fine, and woke in this condition. Blood sugar is fine. Pain has increased. "full" feeling has his refusing all food, and having trouble drinking. He looks so bad we go to the ER, where we are admitted over night. This time the bounce back doesn't come as quick, and he still seems "not quite right".

The week before Christmas I would need to go pick him up from school. He left fine that morning, and a few short hours later he was in the nurses office. We would have to wheel him out in a wheel chair to my vehicle. I stopped home, grabbed a few things, and took him to the ER. He is in DKA again. This made no sense in regards to his blood sugar. They get an IV going, with insulin, and his blood sugar would drop like a rock and "poof", the ketones are gone. Finally someone listens when I say there is more going on than Diabetes. Something is causing him to be SICK. Ped Doc runs a A1C, and it's amazingly at 7, which shows he has really improved his control, and proves what I said, it was not out of control blood sugar causing DKA and that something else is going on alongside the Diabetes.

At this point...since July, he has had multiple ultra sounds, a CAT scan or two and a MRI or two. (it's all kind of a fog). The liver has always remained the same. Enzymes are always a bit off, and electrolytes are always low. We have an appointment to see a GI in Lincoln, but can't get in until the end of January. A Doc in our family practice had a Upper GI test run, in an attempt to start what the GI might when we finally get in. It that shows irritation, which is no shocker due to the amount of heartburn he has been having.

The Ped Doc at the hospital orders a stomach emptying test while we are in the hospital. Sure enough, it comes back showing he is emptying slowly. She calls the Lincoln GI to see if there is anything that can be done at this point, maybe even move up our appointment...something. Not only do they not move up our appointment, they DROP it claiming they didn't know his age. (which is not true, because this Doc who originally called them, and I had told them initially...anyway, that is mute at this point.) We are devastated. The Ped Doc is angry and knows he needs seen. Bless her heart, she calls and gets us worked into the schedule at BoysTown, with one of their Ped GI's.

We see him the Monday before Christmas. He is amazing! Looks at all his records, asks questions, examines Jackson himself, and talk some more. He runs some new blood work, has an ultra sound done right then, and wants us to set up a colonoscopy and upperendoscopy. He wants to "see" what is going on and grab some biopsies to check for things like Crohns and Celiac.

After the blood work and ultra sound we leave only to get a call 15 minutes later asking if we can come back. BT GI wants a different picture of Jackson's belly. We hadn't left town yet, and weren't far away so headed back. The next day they call and tell us blood work is basically the same, but that over all looks good and they have ruled out some other things. I don't know what all those "things" are, and at this point it is mute. The ultra sound shows he has a gallstone, but that it is on it's way out. None of the other scans had showed this, and this was why they had us come back. They state it is "on it's way out" and should pass no problem. The order a 24 hour urine test. It will come back showing his Kidneys are ok, and there is no Wilson's disease with them. He has a extended MRI scheduled, and that shows that the gallstone is gone, liver status hasn't changed, everything else looks good. (All of this happened in 2 weeks time)

Two days before the scopes, 3 weeks from our last visit, we are back in the ER. Same symptoms, ER Doc doesn't listen to us when we say to call BT GI before doing anything. ER does all the same tests as before, blood work shows possible appendicitis, scans show it is fine...again, but they discover his liver has grown again. At this point I throw a fit and they FINALLY call the GI. At this point, the BT GI calls the GI Liver clinic in KC to get us an appointment down there. We go ahead with the scopes were we discover he has the H Pylori bacteria, and where Crohns, Celiac, lactose intolerance and other things I am not sure of are ruled out. WHEW. A medicine regimen is started on the bacteria.

Just a few short days after the results are in from the scopes, we head to KC. The BT GI told us o expect a liver biopsy. Despite the fact that BT had sent ALL of Jackson's records, and received confirmation of receipt of 31 pages of them...the Liver GI can't locate them. He doesn't do a biopsy stating he "knows what he will find" and it's going to be related to is diabetes. He wants to wait and see if we have any more "episodes" and is confident we wont because he is sure the H Pylori is the cause of them. A very frustrating and disappointing visit.

However, as Jackson take the meds we start to see his youthful vigor come back, his coloring looks good, we even see his 16 year old attitude return. Finally, are we at the end??? Was this pesky bacteria truly the cause of it all???

On the last day of his meds, Jackson wakes up symptomatic. Robert takes him to the ER in Omaha (Children's). Hydrated and sent home. He is out of school the next day (Friday). Monday we go to the BT GI. He is shocked to discovered KC Liver Doc did not do the biopsy. After a long talk, reviewing everything again...BT GI feels that we really need the Liver Biopsy. So we will be going back to KC. Date as of this writing yet unknown. A new med was started to try and help manage pain and relax the whole gut area, just to see if it wont help with symptoms. BT GI is very curious what Endo's will say later this week as we have an appointment.

Stay tuned...

Latest Fairy Gardens

Gnome Home, using a old bird house my son made and broken pieces for a clay cherub. The gnome was a birthday gift.

Bunny and fairy friends

Fairy and duckling friends

Just the start of decorating an old wooden swing hung on my fence

Radio Flyer Fairy Garden

Fairy Friends enjoying the arbor and a wee fire

Gnomes gardeners work area and mushroom garden

Far corner of the Radio Flyer Wagon Fairy Garden

"Walking Dead" Fairy Garden

Fairy gardens are a fast growing trend, one I have dabbled in a bit over the last couple of years. I have a good friend who has amazing fairy gardens. I can only hope to be as good as her some day.  This year I took the fun to a whole new level for me. I had made an indoor garden, then a few weeks later a bigger one that will go outside.  One day I was looking through the big one and discovered some 'visitors'. My husband had placed a couple of Chibis zombies and Merle in with my fairies.  This got me to thinking.  A few weeks later I would make my "Walking Dead" fairy garden.  Hope you enjoy the pictures!  We have really enjoyed the garden and hope to add "Rick" and "The Governor" as soon as we get a packet of Chibis with them in them.

Overall Picture

Top View

On a run

Guarding the entrance

Camp close-up

To give you an idea of actual size of the Chibis

I will post pictures of my other fairy gardens another time. I can't wait to build the one that will be in our ole radio flyer wagon as soon as we are past the risk of a hard freeze.

Disney's Frozen and It's Underlying Theme

Disney’s movie Frozen is available for purchase today and I wonder if there will be enough copies of this sensation that has swept the nation.  Everywhere you go you hear kids belting out the songs...Let It Go, Do You Wanna Build a Snowman, For The First Time in Forever...

Frozen products were in such demand, when I was at Disney in Orlando in January it was impossible to find a single Frozen item for purchase, and they had been sold out for weeks. Obviously Disney did not expect the movie to be the sensation it has become.  Why has this quirky Disney movie hit such a cord? I think it has to do with the underlying theme…shame. 

Have you seen the movie?  

We have two sisters, Elsa and Anna, who are as close as two sisters can be. Elsa is ‘special’, and accidentally harms Anna. Her parents are warned not to let others see her ‘gifts’. So Elsa is separated from her sister and society is kept away from both. Elsa spends years hidden in her room, ashamed of who she is, and what she can do. Fighting daily to be someone different than she was meant to be. Anna longs for the days of old, where she and her sister frolic and play. She is confused and doesn't understand, as the truth has been hidden from her.

Eventually Elsa is forced out of exile to face her destiny. Her fear is all consuming and she can't hold back. Suddenly everyone knows the truth of what/who she is. Instead of standing strong and being proud, she runs away. She spends a few euphoric moments feeling free, but she has really done is traded one prison cell for the other and become even more isolated then before.

In the end, Elsa unwavering love for her little sister Anna will bring her out of that cell and break the binding chains of shame, allowing her to be exactly who she was meant to be. 

We have all felt shame at some point in our lives.  Someone of us have gotten past that shame, and it no longer holds us prisoner. Others have not been so lucky. So is it really any wonder why this movie has been so popular?

St. Patty's Day Antics

When the kids were little I used to have so much fun on St. Patty's.  For years I had them convinced we had a wild little leprechaun who showed up and created all kinds of mischief over night.  When they weren't paying attention I would put a wee bit of green food coloring in the bottom of their glasses.  As I poured them their milk, it would magically turn green.

It did not end there.  While cooking scrambled eggs, or macaroni and cheese, or spaghetti noodles, or mashed potatoes the same thing would happen, they would magically be turned green sometimes in the cooking process.  (thanks once again to the ole green food coloring.)

As they got older they became determined to try and catch the wily little fella.  So they would set up traps with some 'gold coins' in them. Some years it was chocolate, later as they lost their teeth and had the tooth fairy bring them gold dollars, they would use those. It was so fun to go through and 'trip' all their traps and make the gold disappear.  (the gold dollars were returned to their piggy banks unbeknownst to them, I usually froze the chocolate to reuse, but some did get eaten, after all being a leprechaun is hard work!)

Sadly my kids are teenagers now and the fun of St. Patty's day just makes them roll their eyes at me. I miss the days of silly innocent fun. It will be interesting to see if the tradition carries on when they have children. (at least 5 years from now...no sooner, 7 or 8 would be good)

Adventures in Vegetarianism (is that even a word?)

So my young daughter declared she was going to go meatless during Lent. I quickly jumped on board with her, as I have always wanted to give it a try, and who knows, even if I don't stick with it full time, I hope to stay with it at least 75% of the time.  We are not doing fish, as I feel that is a meat.  I confess I love shrimp.  I like a good hamburger, and chicken is always yummy, and I can't resit lamb when ordering Indian.

Anyway, I digress.  Today is the second day as a vegetarian and so far so good.  However, as I see and smell the regular beef burgers the boys are enjoying, I am having a hard time waiting for the homemade veggie version is currently awaiting the oven to finish heating up. (maybe I should not have let myself get so hungry.  I did snack on a small bowl of plain brown rice to tide me over)

I am really excited for these as I have had some in restaurants.  I also like a giant portabella mushroom cooked up to substitute for that ole burger experience.

So here is the original recipe, from  Delicious Living magazines May 2012 edition.

Black Bean Burgers

3 cups coked black beans (or 29 oz can unsalted, drained and rinsed)
2 cups cooked brown rice
1 cup bread crumbs
1/3 cup finely chopped red onion
1/4 cup chili powder
3 Tablespoons ketchup
1 Tablespoon minced garlic
1/2 cup finely chopped walnuts, toasted
1/2 cup nutritional yeast
1/2 cup finely ground flaxseed
1 teaspoon salt
1 teaspoon black pepper
1/2 cup toasted sesame oil
1/2 cup water

1. Preheat oven to 400 and lightly oil an oven-safe dish and set aside.
2. In a food processor, combine all ingredients except sesame oil and water. Alternately adding the oil and water, process until mixture is sticky enough to hold together, but not wet, scraping down sides occasionally (process in batches if necessary). There will still be chunks.
3. Form into 10 patties and place in dish. Drizzle with a bit of olive oil and bake for about 25 minutes, rotating pan and gently flipping burgers halfway through.

Now, that being said, anyone who knows me knows I fiddle with a lot of recipes.  This time some of the fiddling came down to "oops, I didn't recall using the last of that, what can I substitute easily."  That would be the case with the chili powder, so I used 1/2 chipotle powder (which I love) and 1/2 chili lime powder. Tasting the mixture tells me this will be a bit on the spicy side, but then I like spicy. I had the same problem with my sesame oil, I had used it all and not replaced it, so substituted olive oil. I knew I did not have nutritional yeast, so had not planned on using that.  I had most of the patties done when I realized I had forgotten the ketchup!  I was not redoing them, as they are kind of a sticky mess.  So instead I just brushed some on the tops.

*sigh* I thought I would be eating by now, as I hoped they would be cooking while I typed, but I goofed and shut my oven off instead of setting the timer once it was finally hot.  (Don't ask) For some reason, my oven wont always come back on. So I am cooking one in the skillet.  I will 'bake' the rest once my stove will let me heat it again.

FINALLY, my stove top patty is done!

Topped with lettuce, tomato, avocado and grilled onions.

Well, it is yummo, and on the spicy side as predicted.  It's a little fragile, I don't know if I got it too moist, or if the nutritional yeast would have made a difference, or actually baking it will firm it up. I will know how at least one of those elements make a difference when I can bake the others.

Update:  They are out of the oven and seem firmer.  We will freeze the extras (it made 12!) and pull them whenever we fix the boys burgers.  Tasty!

Words of Wisdom From My Amazing Paternal Grandmother.

In the wee hours of the morning, my father was going through a bin of stuff his sister-in-law had given him upon the death of his brother. It contained pictures and some papers of my grandmothers. He found this little gem written by her. I have left all the grammar, punctuation and paragraphs as written. I always knew I was a lot like her, but I saw a lot of my own thoughts reflected here. She has been gone many years now. Her ashes spread around a giant tree at her little country church. She loved her trees and her church, I can think of no better place for her to lay. Miss you Grandma!

Joyce Sargent Allen...fall 1942...baby-Son Tom
More than likely taken in New York

What Life Means to Me

Joyce Sargent Allen Kraus

Sometime in the 1950's, possibly early 1960's


For me, life is like Nebraska weather, ever changing and not always pleasant, but never boring. There are calm times, dreary times, almost perfect times, and on occasion a veritable tornado threatens everything.

The most important influence on my attitude toward life is no doubt my religious faith, which keeps me on course through all the storms. This is a gift for which I am truly thankful, and one which never seems to stop growing and developing.

I grew up during depression times, the oldest child of a large family, but I have never felt that this did me any harm. It prepared me for managing in the lean times,and also for really appreciating the more prosperous ones.

It seems to me that the stormy times of life are the real growth periods, because at these times we are forced to make sometimes painful decisions about what our values are, and to take a stand for what we believed in. I believe that real maturity consists of this knowing what we stand for, and having the courage of our convictions. Many quite young people show this quality, and many older ones seem never to have developed it, and some just seem to drift along without ever standing for anything.  Here I do not mean that we should take the stand of the bigot--our ideas should be open to change and refinement. I do contend that we should be willing to think about and discuss the vital issues of life, and I admire the person who does whether I agree with him or not.

Consideration of others should be one of our first obligations. I believe that all of our talents should be regarded as gifts and developed for the general good, and shared gladly with others. I thoroughly dislike the snobbish pride which causes a person to look down on others who are less well blessed as though the color of his skin or the ability or I.Q. he has were his by his own merit.

Everyone seems to be searching for security, but I think a good many are searching in the wrong direction. Money and material things are nice to have, and we need some of each just as we need food and shelter, but they are only comforts. In analysis religious faith and integrity of character are the only real security, and these are the qualities I have tried to help my children develop. I firmly believe that this is the best legacy I can leave them, because with these gifts they can life successfully under almost any condition. No amount of money could buy them this security.

Henry Ward Beecher summed up my feelings about life much better than I can when he said, "No man can tell whether he is rich or poor by turning to his ledger. It is the heart that makes a man rich. He is rich according  to what he is, not according to what he has."

The church she where she lays at rest.