For those who follow me on facebook, you likely know that Joshy is in the hospital.  I grabbed the computer when I was home today so that I could attempt to get a few things done, if J cooperates, which he is actually doing right now.

This go around Joshy is breaking 2 streaks...

1. He has not been hospitalized since May.  That's like 7 months ago!!  In fact this is the 1st time he has been hospitalized in the new wing of the local hospital.  He has been in short stay in the new wing, but not on the main inpatient ward until now.
2. He has not needed a transfusion in nearly 2 years!

I guess all streaks are meant to be broken - S-I-G-H!

Joshy had been acting "off" on Friday.  We had gone shopping, but taken precautions, on Thursday.  Friday he was just not himself and I debated taking him to the doctor, but he didn't really have any symptoms, so why take him, right?!?  Besides, Saturday was a missionary fellowship which we were planning to attend.  The other missionaries worked hard to make it so we could come.  Again Saturday, Joshy wasn't acting like himself, but, yet again, there weren't any specific symptoms either.  Sunday dawned with a very lethargic, cold boy.  His temp would not register on the regular thermometer.  I hunted down the remote thermometer which records lower temps, charged it up, put it on him and waited for his temp to go up...

and waited..

It finally made it to 30C /86F

Off to the ER we went.  Labs, influenza & RSV cultures were run.  No flu or RSV - Thank you LORD.  Labs were still funky and the infection indicator was elevated.  Temp was slowly rising, so home with antibiotics.

At home, his temp finally started making some good upward progress, but lethargy continued.  Then after bedtime meds things got interesting...

He threw up all his meds :/  Mess cleaned up, boy changed, meds re-administered with minimal water.  His daily fluid intake was low and with kidney issues this is not a good thing, so about 45 minutes later I attempted to give a little more water - something that is usually fine.  However, Joshy decided to return the water along with blood!

Called the ER.  Nurses took the info & talked with the doctor.  Called me back.  Talked to the doctor.  Called back and said we should come in.  Quick listen and we were whisked off to a room.  Surprisingly, we then had chest & abdominal xrays, labs, then more labs, then even more labs even on a weekend night!  Pneumonia in upper left lobe, so monitors & O2 came on board.  Later that day...the real Monday morning, you know when the sun was actually up.  There were more labs & an upper GI along with...

More vomiting.

More blood.

Infection indicator further elevated.

RBC's steadily dropping.

Right lung pneumonia.

Crazy low stats.  More O2.

Fighting the mask, causing more coughing, wonky levels.

Sedation & a ventilator.

Different medications.

Tuesday came with more labs and another chest xray. Hemoglobin went below the magic line so a transfusion was ordered and is now slowly going in.

Nice big room, with a 1/2 bath VERY nice!!  Very good it is big, because Joshy is attempting to fill it with all sorts of equipment.

Alright mama, if you won't let me pull my mask off I will attempt to chew it off!  (Picture taken after the nurse had given more sleeping meds and he had settled down.)  His fighting the mask is taking a toll on his body because he works himself into a frenzy.  Also with IV's in both arms holding him down without damaging an IV site is hard!  **Last night Joshy needed the ventilator, tonight we are going to try just the O2 mask.  So far stats are staying up with 4L of O2.

Where do we go from here?  LORD willing, numbers will start improving and lungs will clear.  At this point he needs to stabilize before any though can be given to possible length of stay.  Praying this happens soon so that we might make it home for Christmas.

Jerry & I are tag teaming so that one of us is with Joshy 24/7 while classes are being covered and the girls are being taken care of.   With extra Christmas events this is challenging, to say the least.   So far the girls are doing good.  Kei's school is attached to the hospital and she has been able to come to Joshy's room after school.  I think that is helping her stay emotionally stable.

Please pray for us.

Let it snow, let it snow, let it snow...

Just sort of which we had no place to go

Our 1st snow of the season seems to be taking things quite seriously!  Guess if you are going to do something, you might as well do it right :/

Yesterday morning we woke up to a dusting of slush - a snow, rain, slush, sleet sort of thing.  The ground was white so it was more snow than rain.  When I went to class @ 1:30 it was the same.  When I headed home @ 5:00 there was a good 2" of actual snow on the car.

Last night...

This morning...

Forecast...

Today is a missionary fellowship get together the next prefecture over.  The highways are open, just requiring chains or snow tires.  At least where we are headed it should be sunny

Welcome to winter!!

Oh the weather outside is frightful...

So we need some festive lights

Last week all our students decorated triangles.

Yesterday we put them all together and added some lights.

ECS is ready for Christmas!!

On Sunday we decorated the house.  While Jerry & the girls were at AWANA I got creative with some old baskets, & decorations.

Putting it all together.

Add outdoor lights...

And a tree... we got a new LED fiber optic tree to replace the tree we bough our 1st year in Japan ('91)

The weather isn't as frightful when we can enjoy a splash of Christmas!

Life is full of holding patterns.  Some are shot lived and some last much longer than expected.

Yesterday was another cancer center checkup day.  We are back to weekly checkups until we know that his levels have stabilized, thankfully some of the checkups can be done at the local hospital.   Yesterday's checkup revealed that the platelet plummet has leveled off & the level of immune suppression drug is back down in the optimal range   A couple of the kidney function tests were somewhat improved.  One of the kidney numbers continues to rise.  I was the picture perfect check up we would have liked, but it was much better than other recent checkups have been.  Platelets are still very, very low so we continue in the hold our breath, be careful of bumps, holding pattern.  Praying that next weeks checkup at the close hospital will show some increased good numbers & decreased bad numbers so that we can get back to monthly checkups.

This year's Thanksgiving outreach event had a few extra twists just to keep things from getting boring.

Joshy was scheduled to go to short stay from Sunday afternoon ~ Tuesday morning.  I thought from 2, we got him there and the nurse told me he wasn't due until 3.  This was right in the middle of my planned pie baking time.    So Joshy "helped" trip me bake pies.  He loves to sit smack dab in the middle between the sink and the counter.  I did manage to not step on him, trip, or drop a pie AND actually got the 1st 2 pies in the oven before taking him back to the hospital for his "vacation".

When it came to getting the sweet potatoes on... I knew I had gotten big potatoes, but I honestly did not think that 3 sweet potatoes would more than FILL my big crockpot!

I put both the potatoes and the sweet potatoes in crockpots this year.  What a wonderful time saver - make things MUCH easier!!  The dressing went into a 3rd big crockpot.  This ended up going into the oven for a few final minutes, but all in all it was also a winning combination.

Monday morning, didn't dawn quite as planned... I woke up in pain    With Jerry's help, we got the 1st turkey  on and then I went to the ER to get antibiotics for a UTI.  Thankfully, the ER on call was at the hospital I usually go to.  They were not busy and it didn't take long to get what I needed and back home.

The rest of the morning, I puttered, checked things, we worked together to get the house in order and set up for a party.  Kei, our secretary, arrived about 1pm and we went to work getting everything else ready.  Again having things in crockpots really helped!

Guests started arriving just before 6... and the party got underway.

Another thanksgiving experiment... I kept all the vegetable peelings and thew them in the roaster oven, added the turkey bones, filled it with water and turned it on over night.  This morning I woke up to a lovely roaster full of stock.  It didn't look very pretty to start off, and it took me most of the morning to drain & strain everything because I don't have a strainer big enough to hold a whole roaster full of bits n' pieces, but I now have a freezer full of yummy turkey vegetable stock!

Another huge Thankfulness... when we went to get Joshy from short stay this morning, the nurse told us that "he didn't sleep."  Someone seemed to think that 1 am was a wonderful time to start the day O_o  I am very thankful that he was able to entertain the nurses and not mama & daddy.  After a busy, busy weekend on top of not feeling the best, a full nights sleep was needed.

What to do... Kei needed dropped off at school @ 8:50am.  I had class @ 10:00am.  I could drop Kei off and go back home for 30 minutes or I could take advantage of a rare sunny-ish day.  Bekah ask if I would be home soon.  I reminded her that I had class, but could come home for a few minutes.  She say, "Or you could go for a walk."  I love the young woman who is peeking out of her teenager shell!

I decided to drive to the sea rather than cope with wet trails at the park.  It was nippy, but beautiful!

It was also refreshing!  Cold, wet, dreary days filled with medical appointments drain me.  There is nothing like walking in God's creation to refresh & renew one's soul!

AND in the process I got a nice 2km walk in

What refreshes you?

P.S. Joshy is acting better.  We won't know for sure how his levels are until next weeks appointment, but if actions are any indication then things are looking up.  Please keep praying.

Today was Joshy's Cancer Center checkup day.  We have had better appointments...

~ Out of whack kidney functions are further out of whack.  His BUN levels are the highest they have ever been.  His sodium levels are low.  His potassium level is edging upward to the danger zone - the zone that landed him in the hospital 3 different times during the spring.

~ Platelets, continued their decline, dropping almost in 1/2 again.  In the past month they have gone from 90,000 to 29,000! (90,000 is about 2/3 of normal).   10,000 puts us in the need a trasfusion

~ Neoral (cyclosporine) levels were at 240... optimal levels are between 100-150.  Cyclo is a nasty drug.  It is known to cause kidney & liver damage, especially if it goes above the optimal levels.  BUT it is the drug that is saving Joshy's life, when it isn't trying to kill him.

There are 2 likely possibilities of what is going on with the platelets...

1. The Aplastic Anemia is becoming  active again.

2. The kidney problems are causing the platelets to drop.  This is the most likely of the 2, we hope.

BUT

Because the kidney are not working well, they are not getting rid of the toxins in the drug.  These levels are building up in his blood .   The higher drug levels are in turn causing more kidney damage... which is causing them to lose more function.  It feels like we are in a death spiral.

The doctor is reducing the drug dose in hopes of slowing/stopping the downward spiral.  We are also back to weekly checkups.  Thankfully, the cancer center doctor is saying we can alternate weeks between the local hospital & the cancer center.

The words - hospitalization AND transfusion also came up today.  If levels do not stabilize by next weeks appointment we could well be looking at another club med "vacation".  The doctor did say that if a hospitalization is needed that we could chose between our local hospital & the cancer center.  The doctor will be emailing our local doctor with details of what is going on.  I hope the local doctor will consult the kidney specialists (same hospital).

In the mean time, we watch, wait, & pray.  We will head back to the cancer center next week for a checkup.

Please pray!

What's a quillow?

A quillow is a blanket/pillow.  But it can be more than that.  It is a comfort for sick kiddos.  It shows that people care, people are praying.

Kyle's Quillows was born after Kyle had a bone marrow transplant (BMT) because of Aplastic Anemia.  You can read his story here.   You can also follow their facebook page.  I enjoy following their page, seeing pictures of children with their quillows.  It brightens my day to see someone turn some simple fleece into a ministry tool.

Today, Joshy received his quillow

Thank you so much Kyle & company!!  (Joshy signed Thank you, but I wasn't fast enough to catch it on film.)

I have thought about starting something like this here in Japan, but haven't found the energy nor remembered the sewing skills.   My heart goes out to all the children, especially, we see at the cancer center when we go for Joshy's checkups.  Tomorrow when we go I need to ask how many children are in the hospital.  I hope to take care packages next month.  This year the packages won't include quillows, but maybe they will in the future.

BTW - on the link above there is information about sewing days & ways to donate, if you feel lead to do so.

If I say, “Surely the darkness will hide me
    and the light become night around me,”

even the darkness will not be dark to you;
    the night will shine like the day,
    for darkness is as light to you.

Psalm 139:11-12

So many times people try to hide from the LORD.  Today's Sunday School lesson was about the Lost Sheep (Luke 15).  I started the lesson out by asking if the children liked to play hide n' seek.  Then ask them to find the story in the Bible about hide n' seek.   I know this is an odd angle to approach the story from, but as I thought about it I realized that many times when we are lost, it is because we are trying to hide from God.

Today instead of separating into younger/older groups we were all together.  I wasn't sure how the craft would go over with the older ones, but everyone seemed to enjoy making sheep.

I hope that the message will be remembered.  Your hand (you) are a sheep.  If you choose to hide from God, He will seek you & He will rejoice when you come back into the fold.

Are you playing hide n' seek?

Today ended up being craft prep day.

Thanksgiving week all our children's classes will be decorating triangles.  All the triangles will then be put together to make the ECS Christmas tree... something like this.

Thanksgiving is not a holiday here, however, the 23rd is a holiday.  This year because the 23rd is a Sunday, Monday the 24th is also a holiday.  We will have our big Thanksgiving dinner on the 24th.  The 25th will then start a full week of classes, because of the work involved with the Thanksgiving dinner, the craft prep needs to be done before the dinner prep starts.

Some sample tracts arrived in the mail this week.  Today Jerry & I had the opportunity to look them over.  Next week, I will be heading to Niigata city for Joshy's cancer center checkup.  There is a small Christian book store in Niigata, I hope to stop and pick the tracts up on the way home.  We  decided on a Three Trees tract.  We will also, at least I will, be reading the story in English during class time.

Tomorrow I have Sunday School.  The story is "The Lost Sheep".  I found this craft to make.

Then I have this idea for the Sunday School Christmas party craft... Silhouette candle holders using this.

Today I got started on making the template.  I will likely end up cutting all the silhouettes... this may end up being a really BIG project O_o  I want to get a sample made soon just to see how hard it will actually be, just in case a new craft idea needs to be found.

In between, shopping for supplies and actually doing the craft prep, Joshy's new dining room chair arrived.  He has outgrown his wheelchair we have been using at meal time, yet cannot safely sit in a regular arm less chair.  Armchairs are not the easiest thing to find, but last week I fount this one on-line.  It arrived like this...

It took a little doing to turn it into this, but it was worth the effort.

Ans, YES, we are using a luggage strap as a seat belt

It has been a good day, but I am feeling a little crafted out.