Life update

Things are going well. I like my new job. It works well in so many ways. It’s close, in fact I walk home the 2.5 miles a few times a week (when nothing requires me to be home early). There is no food stockpile, so I expect to lose weight. I like the work and get to learn a lot of new things. And I haven’t even got my first bigger paycheck yet.

Misha is rocking! He is walking all over the place, although we still need to work with him standing up. His balance is much better. When things settle down, we need to contact the Shriner’s people to have them look at his feet. He is picking up a lot of new signs. He now also does flower, please, yes, and I believe I got him to show me watermelon yesterday. This evening I am taking him and Kiril camping to the ward’s Fathers and Sons. It will be interesting how he takes it. The last two times, he, in no uncertain terms, displayed a serious disdain for being in a tent.

Misha is the Man! Dasha too!

My kids seem to be staging a revolt. The are throwing off the shackles of complacency and bursting forth to new horizons. Misha is feeding himself! We have been working with him off and on, trying to get him to feed himself. Finally yesterday, Ira gave him some rice pudding and he, with intense concentration, fed himself spoonful by spoonful.

Misha is also sooooo close to standing up without assistance. He knows how to do it, but doesn’t like to yet. So we have to keep encouraging him. He also began to say Mama and Papa with prompting. Progress!

Not to be shown up by her little brother, Dasha learned to ride a 2-wheeler in about an hour. We had a bike fixing session the other day, working on Kiril’s and her bikes. Ira said to take off the training wheels cause she wanted to teach her to ride without them. Dasha, of course, was skeptical, but after a couple of trial runs with me, we went to the school yard and within an hour was starting, stopping, turning and cruising around the basketball courts. Yesterday she was cruising around the block. Makes me feel stupid. It took me weeks to learn.

One door closes, another opens

It’s been an odd couple of weeks.  Much has happened.  We finally got the “official” diagnosis for Misha.  He has officially 1p36.3 deletion disorder.  Now that we have our diagnosis, what now?  Well, he is going to need an MRI, ECG, and will need to see an orthopedist.  We will continue with Kids On The Move.  We’ll work with him at home to try to give him a good life.

Speaking of Misha, my wife was pleasantly surprised when she got home how much he has progressed in his walking.  He can’t independently stand in the middle of room, but he has been cruising, then releasing and toddling across the room or down the hall.  He is stopping, restarting, changing directions and his free standing is improving.  We are still working on his signing, trying to encourage him to say new words, and so on.  The battle continues.

My wife finally got back from Russia.  Her flight from JFK to SLC meandered around the tarmac for 7 hours before they canceled her flight, stranding her in NYC.  The earliest flight out was 3 days later, on Saturday.  Luckily, there were 3 other women in the same position who were able to share hotel costs with her.

We found out a couple of days ago that her father passed away.  I think God planned it very well.  He was about to be transferred from the hospice he was in to another place and that would have been rough on him and my mother-in-law.  My wife was finally home (being there for the funeral would have been rough on her) and had been able to say her goodbyes.  So he slipped into the eternities at the best possible moment.  My mother-in-law, of course, has to face this but not alone.  Now we can move toward getting her over here.  Yay!

Finally, I got a new job.  It was a long and difficult decision.  I like the place I work, what I do, and the people I work with, but it wasn’t working for me financially, so I had to start looking.   Especially with Misha, it was important to do this.  Unfortunately, it is not the best time for the company for me to move on and I would, in all reality, prefer to stay.  And I lost a trip to Amsterdam in the process.  Se la vie!

So, when one door closes, an other opens.

Death to Bureaucracy!

Not unlike most people, I have a high disdain for bureaucracy.  Having lived in Russia and Ukraine, I got my fair share of the post-Soviet Soviet-style bureaucracy to last me a life-time.  It’s good to day that in the commercial sector, Russia is catching up.  In the gov’t sector, it’s as bad as always.  The reason that bureaucracy is sucky, is the fact that the people working in those areas are, as a rule: spiteful, lazy, apathetic, have a general disdain for those that they are serving, and/or a mixture of the above.  They are too important in their respective positions to do what they are there to do with the least bit of humanity.   And it’s not just Russia.

My wife is at home in Moscow right now visiting her mom and dad, who is failing fast.  When she got her new passport, a note was attached saying that she was to appear at the Ministry of Foreign Affairs and  get a stamp on the 3rd page of her new passport somehow connecting it with her internal passport (good example of stupid, asinine Russian bureaucracy), or risk not being let out of the country.  So upon arrival, she immediately went to the MFA to get her stamp.  When she got her passport back, she (being a worrier of sorts) asked the lady there if the stamp was on the right page.  The lady looked at her and instead of being polite, or being polite and looking said, “And if it’s not?” to which my wife said, “According to your documentation, if it’s not on the right page, they wont let me leave.”  to which the reply came, “If they don’t let you go, it’ll be for some other reason.”  Now that’s the Russia I’ve come to know and love.

Fast forward a couple weeks.  Yesterday, I went to pass on a whole  slew of documents to attempt to get medicaid-disabled for Misha.  My wife being out of town, I had the 4 kids with me.  While I was there, I asked my kids to behave, which of course they didn’t.  When I went to turn in the documents, the two young women at the desk were chatting away, not doing anything else.  The one who graced me with her attention told me to make copies of the documents and to write the case number on every sheet.  So while I did that, my kids are bouncing off the walls.  Asya was trying to keep Misha happy, which he wasn’t sitting in his stroller and Kiril and Dasha were being the circular catalysts of terror that they tend to be in these situations.  When I finally got done, the other girl took the documents and said, “Oh, the case number is already here.  Cool.”  The other girl said, “Yah, I told HIM to do it, so I wouldn’t have to.”  At that point, I was ready to spit nails and use some nasty language.  If I was alone turning in the documentation, it would be one thing.  But whereas I was trying to do this with 3 kids and a baby and as they were sitting on their posteriors doing nothing whatsoever, and considering they evidentially do this themselves (I believe they even had a stamp to do it for them), I somewhat pissed me off.  Apathy and laziness.  Whatta way to run the govt.

While the cat’s away…

My wife left this week (rather unexpectedly) to visit her dying father in Moscow.  She had been waiting on her passport from the Russian consulate in San Francisco, which is even worse than waiting for one of ours.  In an unexpected burst of efficiency, they returned her passport to her in less than the minimum posted time of 3 months.  So the day she got it, she booked passage and left two days later.

Unfortunately, the cheapest flights were for nearly a month’s stay, so she will be gone a very long time.  But her father’s health is fading fast, so it was good that she went when she did.  My saintly mother is helping out considerably while she is gone and I will be able to work and take care of other needful things.

One of her worries and a point of curiosity for me is how Misha is going to react to this.  He is 19.5 months and usually that would be a problem with a small child like that.  They typically would go through a “mourning period” for the loss of the parent and would have issue when they returned, but who knows what goes on in the head of a 1p36er.  He is such a good, sweet kid.  When I have had to travel, he will sometimes give me a “crusty” when I get home, but warms right up.  Of course the most I have been gone at one time is a week (at home a day, then gone for another week).

In any case, I plan on having a good time with the kids.  Try to keep their minds of missing the mommy.  I will have to take em to the zoo or something.

Catching Up

Things have happened since my last entry. Things usually do. So we’ll play catch up.

We are still waiting for the official results of Misha’s FISH test to set the severity of his deletion. We are assuming that it will be not terribly large, considering his consistent progress. He is doing very well cruising around and even launching himself between objects while taking a few steps. He has caught on really well to three words in ASL: eat, drink, and more. Very important. He seems be be communicating his needs better as well. Nearly everyday, he is doing something new and exciting, at least for us.

Had a couple of crazy weekends in a row. The first came after a tiring week where my wife participated in the local “Living Traditions” festival. A friend of hers got her involved with the Utah Arts Council. I, who was not planning on having anything to do with it, was sucked in like a bug into a vacuum. I had part of a week to build her a new puppet theater. Luckily there was a good “recipe” online which proved very simple and effective. After I finished building it, she made me learn how to operate a sewing machine in order to make the covers for it. A sewing machine was never meant for man to operate. This was all while she was busy painting and making puppets.

She then made me drive her up, assemble and participate in the puppet shows which we did every 10-15 minutes for 3 hours. It was awful. After finishing that, we traveled back home, picked up my son, ate lunch then went back for another 3 hour stint. Luckily, we didn’t have to do any more puppet shows, but sadly, my entire time was spent watching the kids. I even missed the bagpipers.

This weekend I took my wife to see Pirates III, met another 1p36 family and celebrated Memorial Day by spending all day in the mountains.  It was exhausting.  Meeting the other family was definitely a highlight.  They aren’t terribly far away and it’s nice to talk with people who are a little further along this adventure than we are.  Their little girl was fun to watch and we learned some new signs to work with Misha on.

Some weekend, I want to spend the entire thing relaxing.  Maybe sometime when they send me out on business, I’ll get to…but I doubt it.

Eureka, we got it!!!

We just got a call from the geneticists at Primary Children’s. We nailed it! My research efforts were dead on. We are now the proud parents of a 1p36 kid. You would think my feelings would be more bittersweet, and maybe that will come later, but in reality, it’s an enormous relief to have a diagnosis. They are finishing up the FISH test to determine the severity. So the search is over and the work begins.

We have been working with Misha’s walking, balance, and sign language a lot. His balance is improving. He is actually starting to stand unaided for several seconds at a time. His walking is getting more sure. He is slowing starting to catch himself when he loses his balance. Signing is still slow though. He immediately picked up on “more”. In fact, he had it down the day we introduced it to him. “Eat” and “Drink” are coming along. “Eat” he will do with some prompting (he still prefers to point and say “AAAAAAHH!”). “Drink” he will only do if I take his hand and position it. But he is only 19 months.

Every day, in every way, I am getting better and better

You Pink Panther fans will recognize that line.  After quite a long time of seemingly no progress, these past couple months have been amazing.  It seems that after we fixed Misha’s eyes, he really started progressing.

It seems that every couple of days, we are noticing that he has improved in some way or another.  Whether it’s his walking/balance, how he plays, his interaction with us, he is improving.  It’s visible to me and I see him every day.  My family, who may see him once a week or once every two weeks (we have Sunday dessert as a big family), see more of a contrast.

And to top it all, he is such a GOOD, sweet kid.  He is very well-natured.  I am excited for his future.  He will have one, whatever form it may take.  And we plan on making it the best possible future for him.

How the mighty have fallen…

Late last year, my wife’s father, the evil incarnate, slipped or tripped and fell. He fractured part of his hip, but in a place that should have healed by itself. Therefore, he was confined to the apartment and was doing okay hobbling back and forth from his room to the bathroom and kitchen.

I call him “evil incarnate” for a reason. He is quite the character. A few snippets of his life: before the war when he was 17, he had a child with someone that evidentially he was never married to. Seventy years later, his wife and my wife found out about it. During the war, he sent a letter to his first wife saying that he had been killed. Later he coincidentally run into her after the war and discovered he had another child. His whole life, he was an actor and “played more than 200 roles”. His biggest act, I think, was when he is in his role as a human. When he married my mother in law, she already had 2 daughters from her previous marriage. My wife came along when he was 60 years old. In a 2 room apartment, he insisted on having his own room. His wife and daughters shared the other room until the daughters married off. He would bring home dogs to my wife when she was a kid. As soon as he got tired of them, he would “give them away to a friend”. And these are just snippets.

Each year since we moved back to the States, my mother-in-law comes to visit us on her vacation time. She stays for a month and gets to rest. Every year, my father-in-law throws a fit when she leaves. This year was no exception. She, amazingly enough, talked her sister into stopping in every day to check up on him, make him food, clean, whatever. When she left, he decided that he wasn’t going to walk anymore. And once that dagger was in, he started twisting it, behaving extremely poorly. I won’t go into details.

When my mother-in-law came back, they realized that she was not going to be able to care for him, work, and stay sane so she picked the better two. They found a hospice and took him there. She visits often. His behavior there is lacking as well. This week, they did some blood work on him and found that he has cancer. Probably advanced stages. For an old man who has been selfish, manipulative, and deceitful his whole life, death must be a frightening prospect. We are trying to get my wife over there to visit this year. I wonder if she will make it.

Working with Misha

When we first started seeing that Misha was comparatively not developing as fast as our other kids, I tried to explain it away as normal different-kids-have-different-timetables stuff. Of course, my wife didn’t listen to me. It’s that mothers intuition voodoo at work.

Misha has always been a really happy child, in fact he started responsively smiling really early. He doesn’t have tantrums like my other kids have had. He certainly can express himself when he is hungry, tired, or uncomfortable, however. We noticed early on that he had low muscle tone. He wasn’t able to do things that the other kids had been able to do. When we finally realized and accepted that he was not developing as he should, my wife decided that we were going to have to work a lot with him to move him along.

When he started to lag behind on sitting and crawling, we began doing hands on kinds of stuff, trying to get him to sit up by himself. It took him forever to start crawling. His arms were too weak to support himself. When he did start crawling, for quite a while, he would crawl with his head on the floor because it was too heavy to support with his neck muscles. Now he crawls quite quickly but still will crawl looking at the floor, not with his head up.

When our local early intervention group mentioned that we needed to start working with his pincer grasp, we tried a hand over hand approach, which was trying. We then started taping up  his extra fingers with sports tape while he was eating cold cereal, but that was hard on the skin on his hands.   Eventually, I got an old pair of his socks, cut two holes in each fairly close together, and would don them a couple times a day so that only his thumb and forefinger were exposed.  It was such a good feeling when he finally figured it out.

More on this later.