My son Misha

I have finally decided what I can use this blog for: my son Misha. Early on we began to notice Misha was not developing as fast as my other kids. It’s been long and difficult road in our attempts to identify what was ailing him.

There have been two things that we noticed that launched our concerns:

• Soft stools ever since he was on solids.
• Slow development, low weight.

My wife, bless her heart, is the real trooper and got the ball rolling.  Unfortunately, our first pediatrician didn’t pick up on these things and nothing was done.  A nice guy, but didn’t seem to have the concern.  Through the same office, we got a different doc in their office located a couple blocks from our house.  Dr. Bailey listened to my wife and started ordering various tests.  Several blood tests, stool tests, and urine tests later we still didn’t have anything.

Dr Bailey then recommended that we try going to a pediatric gastroenterologist in SLC.  Dr. Mizell has been a pleasure to work with.  He was open to suggestions and questions.  He completely answered our questions and made us feel comfortable.

After some more blood, stool and urine tests, Dr. Mizell recommended we test for celiac disease.  This required an endoscopy.  It took place just a week after Misha had his Strabismus corrected.

That came back negative, which was a relief.  We then tested for cystic fibrosis which also came back negative, which was a bigger relief.  About this time, Dr. Bailey referred us to the Geneticists at Primary Children’s.

Today, we finally got word, after 4 weeks of waiting, about partial results from the high-def chromosome analysis they did.  It seems Misha has some anomaly in Chromosome 1.  Doing some research, I found that chromosome 1 is the largest chromosome and accounts for 8% of the human genome.  There are more than 350 diseases associated with it including developmental disorders.

I then started searching around for something anything that may have pointed to Misha and ran into the 1p36 deletion disorder.  I am certain that this is it.  The pictures of the kids on the sites I ran into were Misha to a tee.  But I will withhold final judgment pending the results of the next test they plan on doing to narrow down the chromosome 1 find.  We have to wait another 10 days.  ugh.

An Activist for Every Occasion

Yesterday was Martin Luther King Day.  Working for an international business, we tend to have to work on most gov’t holidays.  Not that I don’t mind.  I rather enjoy my job and long periods away from it at home can make me crazy.

Two things just happened to ruffle my feathers yesterday and it’s the ruffling because of asinine things that ruffles me the most.  One was an article in the local-yokel newspaper about how most kids don’t know much about MLK’s legacy, the other people protesting the state legislature for working on MLK day.

I address the latter:  Of all the absurdities.  How in the name of all that’s holy does working on MLK day dishonor him?  Besides the fact that it’s a LAW that they have to start on the 3rd Monday of January regardless of who’s birthday it is.  I can think of to better honor his memory than to pass some good laws (whether or not they have any good ones to pass or not is beside the point).   If you want to protest, protest yourselves for causing community unrest on a day honoring a man who wanted peace.

The former now:  If kids do not know what MLK’s legacy is…who cares.  It’s not the school’s fault.  One thing I made clear to my wife before we started with a charter school this year is that whereever they go to school, the school will not teach them to learn.  It may teach them some facts and figures, but if we as parents do not teach and expect them to learn, they never will.   I didn’t know much about MLK until I read up on him myself, sometime in college.  The same goes for those pinheads who did the study in the article as well.  For all its worth, they probably know less about Washington, Franklin, Jefferson, Hamilton, Lincoln and other equally important U.S. historical figures, not to mention international ones.  So just give it a rest.

Perspective

It’s been a while. The world…my world has been a busy place. I am not one to enjoy the holidays much…I am more of one to endure the holidays. There were good moments interlaced between the insanity of taking time off from work. My wife was busy with various projects throughout December and so I spent a lot of time with the kids. That would have been less stressful if we had planned stuff to do. Instead it was you-watch-the-kids-while-I-do-stuff. It was a blessing to get back to work.

We have been working with our youngest, who is a little over a year old. I lovingly refer to him as our “problem child”. At birth he was 6 lbs. even. Due to low blood sugar, he spend the first 3 days in NICU with an IV, getting poked and prodded, etc. At 4 months, he underwent a bilateral inguinal hernia surgery. He has congential esotropia (cross-eye) which will require surgery this month with the hopes that this will allow his brain to use both eyes normally. We began noticing that he is behind on the curve with his development, in all areas (cognative, speech, gross motor, fine motor). The former two seem to be not as bad as we thought. But at a year, he doesn’t walk yet. He started crawling late. Doesn’t feed himself yet. He also has had since birth (or ever since he went on solids) loose stool and he hasn’t packed on the pounds like he should. He has always been a feather weight (my 2nd and 3rd kids were scrawny too, just not like this), but this has caused some concern. Yesterday we took him to a gastrointestinal pediatric specialist. He is guessing that my kid may have celiac disease. We aren’t certain…it could still be allergies or something of that nature, but celiac disease is the docs first guess. Only tests (and maybe a biopsy) will confirm it.

It really sucks to have to find out that one of your kids, especially the smallest and most helpless, is sick. It’s insult to injury after all he has been through already. I know there are kids far worse off than he is, but is doesn’t make it suck any less.

Unimportant things fall away when these things happen.  Priorities change.  Life continues but with a different motivation.  Again, your perspective changes and changes again.

Bless the Amish

A few weeks ago, the US went through a couple really vile tragedies.  It makes me ache to think about what the families of the victims must be going through.   One was the maniac in Colorado who attacked a school, assaulted his victims, shot one in the head, and then killed himself.  The victim was able to text her family how much she loved them before she was killed.

A couple days later, another freak attacked an Amish school in Pennsylvania, shot and killed 5 girls between 8-14 years of age.   It made me sick to think about it, and frankly, very sad.  You wouldn’t expect to find shining moments in this, but I did.  And they overshadows the great moments of 9/11.

These peaceful people had/have every right to be angry and embittered.  I can only imagine I would be.  They shelter themselves from the world to remove themselves from these things.  While holding the body of his granddaughter, an Amish grandfather urged those around him to forgive the perpetrator of the crime.  They were admonished not to hold a grudge.  When money started pouring in from all over the place, they redirected it into a fund for the guy’s wife and daughters.  They attended his funeral.  They lived their religion.

Needless to say, I am deeply impressed.  The shock of the violence is overpowered by the shock of the faith of these good people.   If only most other people lived their religions like the Amish do.

God bless them, every one.

Morals and the Cause

For the past few weeks, I have been taking the bus to work.  The only advantage to this:   I get to read an awful lot.  There have been several biographies in Russian which have been on my “intending to read” list, but that never happened until now.

So far, on the bus, I have finished reading a Stalin biography, a Khrushev biography, a book written by a journalist during the Brezhnev era, and now am working on a Lenin biography.  As I have been reading, the questions of “How?” and “Why?” keep resurfacing over and over again.  I still haven’t been able to wrap my mind around it.

In the past few weeks in Russia, there have been events which continue these questions.  A while ago, the vice president of the largest bank in Russia was assasinated.  He, it seemed the only person with cajones in Russia, took on the monster machine of corruption that permiates every facate of russian beurocracy and business.  He paid the price for it.  The other incident happened last week.  A journalist, Anna Politovskaya, who was well known for her investigative work had been working on a piece about Russian soldiers torturing Chechens.  She was shot in the head in her apartment building.

In my reading this morning, I finally found the catch phrase I had been looking for that provided and answer to my questions.  Why do normal people become monsters?  Why are atrocities committed in the course of a just cause?  Apathy is one thing, but active participation in the insanity is another.  The catch phrase, and I can’t remember if it was thought up by Lenin, or just used by him, is:

“Everything, which serves the cause of communism, is moral.”

Everything seemed to fall into place.  The horrible violence of the revolution, the stalinistic Red Terror and repressions, Breshnev’s attempt to return to the same after the ousting of Khrushev, modern business and politics there today.

Today we are fighting a war of terror.  With all I hear in the media, which I understand is biased and censored, the only fear I have for this war is that we will adopt the same creed.

And you thought the DMV was bad

A recent post by a friend of mine about the DMV brought back “fond” memories of the tailings of Soviet bureaucracy. This was also driven home by a book I recently finished, titled simply enough, “The Russians” by Hedrick Smith.

Mr. Smith describes how the russians have this mentality to stick it to anyone they can, aside from their relatives, friends, and close associates. It doesn’t matter who you are in life and what occupation you have, any time you can stick it to someone, you feel you have done your job well.

For instance, in my time in the former USSR, I would be in a store wanting to spend my hard-earned cash on some product. Walking over to the sales lady, I would request an item (Russians, in most stores, still require you to pick your object, go to another place to pay for it, then come back with the receipt to take the object). Although she was just sitting there, doing absolutely nothing (not reading a book, talking with anyone, sipping tea, whatever), she would inform me that it was breaktime. Notwithstanding the fact that she looked bored out of her skull, I would get no service until перерив was up.

Mr. Smith, who was Moscow’s desk chief for the New York Times in the mid-seventies, describes going to a new conference. As he was walking in the door, the savage guard lady informed him that his recording device was not allowed through this entrance. He was told that he would need to go around the building to the other entrance, which he did. The lady at the second door, which was visible from the first door, did not even care that he had such a device. When he left, he tried walking out the first door and was told again that his device was not allowed through that door. He did it anyway.

When in Ukraine, the mission office regularly received shipments of supplies from the Area Office in Germany. I would have to translate the shipping documents from German into Russian (I don’t speak German), and our resident miracle worker Lyubov Petrovna, would go and bribe the customs office to release our shipment. On one occasion we were forced to store a shipment in a spare room, sealed with a piece of stamped paper glued to the door and frame, for 8 months for some reason we didn’t understand. After the eight month wait, we were finally able to get a customs agent to come out to the office, unseal the door and take a look at the shipment, and release it into our custody. It turned out that the reason for the holdup was that the customs office had absolutely no idea what to think about a box of cardboard floppy-disk mailing envelopes. I shudder to think how much we had to bribe them to come out and look.

Finally, on a more personal note, was the case with my daughter. My eldest was born in Moscow in August of 1999. Being smart, I registered her as an American (we tried to register as a russian also and ran into such a huge mountain of crap and red tape, that we decided to forget about it). When it came time for us to move back to the States, we went to the Embassy’s travel office (I was working there in security at the time), to procure an exit visa. Russia still requires you to obtain a visa to leave the country although you have to get a visa to enter the country…I never understood that. When I went to pick up the visa at the office, the nice lady that worked there told me that the exit visa had been denied. Having little time to fix this, we had to run to a section of the foreign affairs office. I was refused entry. They would only allow my wife in. Probably cause I was mad enough to shove my fist through several vodka holes at that point in time. Desperately we tried to get the visa but were told we had to get a notarized document, among other things, saying that we as her parents, were allowing our daughter to travel with each of us, her parents, out of the country…although, by all legal standpoints, she was not russian and therefore was really not under their jurisdiction and was already traveling with US, HER PARENTS!!! We had to give ourselves permission to travel with her, together, out of a country of which she was not a legally a citizen!!! Being Thursday or Friday, and with our plane leaving Monday, we scrambled to find a notary public. I don’t remember how much we had to pay the notary public, or how much the exit visa was, but I am sure it was too much.

And my wife wonders why I chuckle when our russian acquaintences run into a little of our buerocratic red tape.

Tom and Jerry, you let me down.

The Manchester Metropoliton Univeristy recently concluded a study indicating that mice, in all reality, don’t like cheese. I’m crushed…I can’t believe those little buggers duped me all these years. And what is worse, one of my favorite cartoons lied to me. Jerry is not a real mouse?

I knew he was something special, something different. He could dance, he was strong enough to throw a pie with an iron in it, he could get smacked with a hammer and just be a little dazed. But now I learn that he couldn’t have liked cheese. He propogated a lie.

Now I don’t know what to think. Do pianos reallyhhurt when you drop them on someone? If you cut off your tail, can’t you just tape it back on? Can’t bulldogs swap their chompers for a better set when you piss them off? I just don’t know what is real and what isn’t.

The most important question, however, is: “Why would someone spend thousands (or hundreds of thousands) of pounds to figure out that mice prefer fruits and grains to cheese?”

180 degrees in 15 years

In a recent article on the “traditional August internet-pedsovet” (pedigological-counsel), pedigogs decided that the school of the new generation should not only provide a scholastic education to children, but also “intellectual, aesthetic, and moral education”. It always makes me shudder when pedigogs decide they want to give my children a “moral education”. In Russia, they are taking it to the next level. The BBC reported today that in 4 Russian regions, Russian Orthodoxy (Provoslaviye) is now a required course in schools.

WHAT???!?!?!? Did I read that correctly?

It seems I did. Its quite a reversal from a scant 15 years ago when Communism was the country’s religion. Not only that, but it’s being offered as a optional course in 11 other regions.

Defenders say “the move will help protect traditional spiritual values in Russia.” Which spiritual values were those? The spiritual values taught under Communism? The spiritual values of Uncle Lenin and Uncle Stalin? For 70 years, Communism taught the people how to be disloyal, dishonest, murderous (at times). It raised a people who learned disception as a form of survival, not to mention what they had to do to get ahead. Religion was at best discouraged, normally persecuted and even severly stomped on. But when Communism died, a tsunami of religion hit the people.

Russian Education Minister Andrei Fursenko also voiced support, saying “schoolchildren must know the history of religion and religious culture. This year, a textbook on the history of world religions is available for the first time. It pays a lot of attention to Russian Orthodox Christianity,” he said.

The whole issue probably stems from the Russian Orthodox church trying to get back it’s pre-communism status (i.e. in bed) with the government. I don’t believe it will achieve such a goal, but this is evidence that it’s trying hard. And we thought propogandism ended with communism.

I wonder if that text book also talks about the break-off groups from traditional Russian Orthodoxy, like the Khlysty, and the Old Believers? They could be counted as part of the spiritual traditions. In actuality, you might say that Russian Orthodoxy broke off from the Old Believers. And everyone’s favorite guy Rasputin was a Khlyst. If that isn’t tradition, I don’t know what is.

But even then, this isn’t very fair to the Muslims and Jews (the two other officially allowed churches under communism). In fact, the Muslims are already talking equal religious time.

In any case, it’s just wrong.  A forced religion class focusing on any one religion is just propoganda.  Those crazy Russians should recognize it more than anyone.  I guess it just goes to show how forgetful people really are.

This is how rumors get started

The adventure begins.

I frequent a russian news-site.  I like to keep up with how things are going over there, get a different perspective than the one spun by homegrown media,  and often enough, they post recent news before CNN.com does.  But today, it really cracked me up.  Those guys REALLY need to do more research on their stories before they print them.

Case in point. The news broke yesterday that Warren Jeffs was arrested Monday evening near Las Vegas.  Now mind you that he is a polygamist and the leader of the Fundamenalist Church of Jesus Christ of Latter-day Saints.  Home media has been kind enough to explain the distinction between his religion and the Church of Jesus Christ of Latter-day Saints (the Mormons).  Here is how the Russian media botched it up.

“В среду стало известно, что накануне в США был арестован один из самых разыскиваемых преступников. Как сообщает издание Washington Post со ссылкой на источники в ФБР, правоохранительным органам удалось поймать Уоррена Стида Джеффса – главу секты мормонов-многоженцев, также известной как «Фундаментальная церковь Иисуса Христа и святых последнего дня.”  or, to translate for you non-russian readers:

On Wednesday, it became known that yesterday evening, in the USA, was arrested one of the most sought after criminals.  As was informed by the publication Washington Post, with a reference to a soure in the FBI, the law-protecting organ was able to catch Warren Steed Jeffs-the head of the sect MORMON-POLYGAMISTS , also known as “The Fundamental Church of Jesus Christ AND OF THE SAINTS OF THE LAST DAY.” (highlights added).  

The article continues to refer to him as a mormon throughout, but it was kind enough to mention that his church seperated 100 years ago from the mormon’s Church.

This is the kind of news reporting that causes riots and tarring and feathering.  The LDS church has been in Russia since 1991.  It’s been in the news before and the name of the church has been correctly translated into russian as the “Church of Jesus Christ of Latter-day Saints”, not “and the Saints of the Last Day”.  Now they are going to definately tie mainstream LDS in with the polygamist-mormons. It’s bad enough that they constantly confuse us with the Amish.

A new adventure.

I have been reading blogs since waaaay after they became popular.  Finally, I decided to create my own.  Why, you might ask?  I think its still an extension of my desire to do something creative and fulfilling other than my job.  So, here I go on another adventure.