Day +685, another quarterly check up goes well

Last week we got results of the latest quarterly checkup.  Once again, Zevi's Chimerism test came back 100% donor!  The rest of the blood work looks great as well.

Zev continues to feel well, play well, eat selectively, but well enough to satisfy mom and grandmothers.  He communicates remarkably well, learning English rapidly and asking one of us for a word he does not know once in a while.  He also continues to have epic fights and meltdowns once in a while.  While I understand those are (at least somewhat) normal for a just-about-five year old, they are still hard to take.

Benjamin gets excellent reviews in school, speaks English with no discernible accent (like he was born here, right?), and still runs like the wind.  He particular approach to misbehavior is "fuss early, fuss often".  He also backs off sooner and does better accepting consequences of misbehavior.  As a result, warnings work better with Benjamin.

For reason I cannot understand that last two soccer classes both of the boys showed more interest in playing (as oppose to, say, lying down to watch the clouds mid-game).  Zev, when he is 'on', can grab the ball and drive to an opposing goal with determination.  Benjamin has shown grit in defending the goal for his team.  Plus, Benjamin both runs and swims well ahead of most kids his age.

At least three times within a month I have seen the following: at some public venue Ben is being moody and grumpy (see fussing, above).  In each case, an adorable little girl materializes and wishes to comfort Ben and hold his hand.  True to the sullen 5-going-on-15 form, Ben ignores the young lady.  In the mean time Zev swoops in, introduces himself, and tries to entertain the young lady Ben is ignoring.  His persistence paid off in one case out of three so far, but I do anticipate greater success in his future.

Over all, the boys are growing.  They can be trying and, for me at least, incredibly emotionally draining to wrangle.  I do hope that within a year or two they will become a little more rational and a little less ruled by their emotions.  The warnings and requests (as oppose to threats) do elicit compliance once in a while.  Dare I say, a tiny glimmer of progress?

Big Island, Day 2

After about a two and a half our drive, we arrived at a gorgeous place called Akaka falls.

A long drive was followed by a near mile long hike and both of the boys walked on their own to the main waterfall, including quite a bit of stairs.

Mom and Zev at Akaka falls

Tired Ben and dad at same falls

After the gorgeous water falls we headed for the Volcano National Park.  But first we stopped to try some fresh coconut.

Turns out fresh coconut and coconut juice is delicious and nothing like what one gets off the island.

Grandpa, dad, and Zev heading over to the volcano's edge

Zev is impressed

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By the way, the stuff all around is is steam billowing out of the ground.  

Sure, you can come right over

Yes, that is a steaming whole in the ground

Looking down into the caldera

sure it was a little grim, but we still liked the place

If you are wondering where Benjamin is: he was a little tired and chose to hang out in the car.

Grandparents by the steam vents.

By the time we got to the lava tube it was getting dark and both of the boys were getting very tired.

Tube!

Alla in the tube

And then it was time to look at the volcano!  Turns out it is very difficult to photograph burning lava in the dark.  Especially if you are an amateur.  But Alla got the pics!

Yes, that's a volcano

Lava!

Turning the Earth

Hawai'i trip, Day 1

Of course, gots to go to the water:

3/7/16, boys with the rainbows

view of the bay

Benya among the trees

Chillin' Zev

Ben returning to shore

time to dig!

And then we headed up to observatories on Mauna Kea.  The visitor center is at 9200 feet and the rental van was struggling for oxygen by the time we got up there.  The temperature went from high 80s to just above freezing in the two hours we drove up there.  The boys were tired and Benjamin and mom spent a bit of time resting before joining in the fun.

Zev, grandparents, and Linda with a native Silversword plant.

Yes, these are clouds that the road disappears into

The setting sun paints the hills

We got shuttles!

Looking at the stars.  Tired ...

... but still goofy

By the time we got  back to the hotel.  Waiting for the train in the lobby.

Day +578, Hawai'i trip, beginning.

Hello!  We have just gotten back from our Make A Wish trip to Hawai'i.  Before anyone freaks out: Make A Wish offers a wish to all seriously ill kids, not just the hopeless cases.  Zev continues to do great, thank G-D, and we all enjoyed the trip.

The wish has been in planning for well over a year.  After much deliberation, we chose the Big Island.  I will post a few pictures here.

Travel day:

Early morning ride in the limo with grandpa, 3/6/16

At first Zev was sceptical...

...but then he got to push a button

... and liked it

with grandpa in Hawai'i!

mom

mom and grandma

At the hotel.  Yes, all the important bits arrived.

The hotel is pretty awesome - it has winged lions!

Actually, the hotel also has a train and a boat, several pools with slides, a pretty awesome gallery of Buddhist art, and an ocean lagoon.

Day +565, 18 month checkup

I am glad to report that the 18 month checkup went great on all accounts.  The bloodwork looks clean and the Chimerim came back 100% Ryan!

Zev is now a little taller and a bit heavier than his brother.  He still does not run as fast as Benjamin (to be objective, few four year olds do) and does get tired a little sooner.  However, when he is distracted and has a goal to walk to, he does great.  On a longer walk that does not include running sprints, the boys walk equally well.

Both of the boys love swimming and both could not care less for soccer.  They are certainly game to practice the skills and celebrate getting a ball into the goal like the pros, but any attempt to get them to participate in a team game results in them walking off, staying on the sidelines, or, in Zev's case, lying down for a nap on the field.

Benjamin loves Legos and can build a set meant for six year old mostly alone.  Over the winter break we built some "12+" toys together.  Zev could not care less for Legos, prefers trains, and both still love cars and airplanes.  Zev, however, is distinctly better at drawing.

Both are starting a to recognize letters.  They do not quite read anything yet, but Zev did recently read O-F-F on a light switch and almost-just-nearly read "OFF" and "ON".

Sleep is pretty good most night (thank G-D, about effing time!) and fights with the boys, while occasionally bitter, are not a daily occurrence.  At least not for each parent.

Day +474, 15 month checkup looks great!

I know I have been long delayed in posting. I am pleased to report that Zev's 15 month checkup was, once again, 100% Ryan! Other blood numbers look great as well.

In other ways life has been the normal variety of crazy - from funny conversations among the boys to ER trips for what turned out to be a sore throat and gas. Oh, well. Cute pictures to follow.

Day +397

Over the weekend we have done something we have hoped for, wondered about, been anxious about for over a year: we met our donor and his wonderful family!

As I have mentioned before we made contact with Ryan on the anniversary of the transplant.  Shortly afterwords, in one of our phone conversations, Ryan and his mother Linda invited us over for Rosh Hashanah.  The next night we booked the tickets.  I wanted to text Ryan "Now you've done it: the Russians are coming, the Russians are coming!" but my wiser half vetoed that.  With much anticipation we boarded the flight to Austin on Saturday.

The only way I can describe meeting Ryan and his parents and grandmother is that it was like coming home to family.  We already had some indication of what a wonderful family the Zimmermans are - from Ryan's act, from meeting Eric a few weeks ago, from talking to Linda and Ryan.  Yet we did not dare to hope to encounter such genuine warmth as we did in their home.

9/12/15, at Austin airport

It did not take long for the wrestling to commence

Later the same day the boys (Ryan's dad Keith, Ryan, Zev and I) got to go to the UT Longhorns game (that's college football, if you did not know, and it is taken very seriously in Austin!)  The game was awesome, the Longhorns soundly beat Rice to the jubilation of the crowd.  Zev got into the spirit of things immediately.  On the way to the game he was asking whether we are going to be on the team. At the game all Zev wanted to do was get down to the field and kept asking whether he can score a goal.  I guess Eric was right and Zev's blood does run orange now.  At every interception and touchdown Zev gamely high-fived everyone and was delighted by cannons and fireworks.  Like I said, taken very seriously.

9/12/15, at the game, pre-cotton candy

At one point Keith decided to furnish Zev with a giant ball of blue cotton candy.  Zev dove straight in and came up for air a few minutes later with a blue beard and sticky fingers.  As we were getting ready to wash him up, I handed the candy to Ryan.  Zev turned to Ryan and said very seriously: "No eat!"  "Can I have just one bite?" Ryan asked.  "No eat!" replied Zev and wagged his finger.

I am pleased to share that eventually Zev shared the candy and then just about fell asleep shortly after half time.

Epic.  And that was just the first day.  Let me just leave you with a couple more pictures, taken during the weekend:

9/13/15 drinking some amazing wine with our new family

Keith, Linda, Zev, Daniel, Alla, Ryan.

Family

Still Day +382, some well overdue posts

Well over a month ago we spent several days at Sunriver, OR over the 4th of July.  Among the swimming and watching the deer play in the woods, we drove up to Mt. Bachelor and rode the ski lift to the top:

Benya and dad on the lift, 7/2/15

Zev rides up

Boys see snow in July

Likin' it

Yea, that was a bad idea.  Wet butts in 3...2...1...

During an obligatory snowball fight

Riding down