Guess I should do something constructive... We have been doing a whole lot of nothing the past week.  It has been lovely AND we still have a few more days before it is back to work.  However, before the New Year arrives I should blog about Christmas.

With all the busyness pre-Christmas, we have made it a tradition to keep things simple Christmas Eve & Christmas Day.  Christmas Eve we did have a more traditional meal, because...blush... at Thanksgiving we had too much stuffing & sweet potatoes, so I thew 2 pie pans of stuffing & a pie pan of sweet potatoes in the freezer.  All they needed was to be baked.   Add some chicken, a salad, & fruit dessert - it was a nice, but easy meal.

Christmas day got off to a late start... having teens in the house make a difference

Presents were opened followed by an easy brunch.

 

In the afternoon, Paul joined us for finger foods & a wild game of NHL Monopoly, which Robin finally won about 11pm.

Good time!  Good memories!!

Oh the weather outside is frightful...

Cold + Wind + Snow (heavy snow warnings) turns the 1.5 hour drive to the cancer center into more than a 2.5 hour drive.  Let me tell you that driving in bumper to bumper city traffic on roads that resemble a bumpy ice rink is not my idea of morning fun :/  I have never liked city driving, I am, however, an Indiana girl & I know how to drive on ice rink roads, but it is not something I enjoy.  I was so very tempted to cancel Joshy's checkup today, but the only other option we would have had would have been to take him on Christmas Day.  Christmas is not a holiday here, so it is business as usual.  New Years, on the other hand is a huge holiday here and all the hospital out patient departments will be closed ALL of next week.  NEEDING to have a checkup before the end of the year & not wanting to do a hospital run on Christmas, we headed out.

After a super busy weekend, I was not up to being out the door at 7:15, our normal cancer center day departure time, let alone earlier than that to help make up for road conditions.  We did manage to be on the road by 7:30, which under normal conditions we could have squeaked in under the wire at our appointment time... OOPS.  We managed to arrive just over an hour late (how does one make a blushing face?).  Letter from the local doctor was delivered to Joshy's CC doctor, labs were drawn, and the wait started.  Labs came back fairly quickly and they were worth it.

Everything but WBC's went up  (WBC's were in their "normal" place , but neutrophiles were low.  Not terrible considering he has been so ill)

CRP, infection indicator, was down to almost normal

Other whonky levels were better as well.

Only other problem area were liver functions which were quite elevated, but that happens from time to time.

The doctor seemed to think that the thyroid med adjustment might have helped the numbers.  He also thinks that Joshy was likely fighting something all of November which would have thrown numbers into crisis.  He seemed very pleased that Joshy has bounced back so well.  We also mentioned that we might start talking about the weening process for the immune suppression drug.  AND we don't have to go back for a month

I was also able to pick up a letter/paper which had to be turned in by 12/26 to update a special insurance coverage Joshy has because of his "heavy illness" (aplastic anemia).  This letter was delivered to the appropriate city department right after we picked up J's prescriptions (the pharmacy will be closed next week as well).

And now I am

for the next day or 2.

Christmas Sunday 2014 was extra special.

During worship, Bekah gave her testimonial.  Worship was followed by a baptismal ceremony.

Following the baptisms was the all church Christmas party.  With lots of food...

Performances by families & groups...

 

And a gift exchange... for the children & adults!

What an exciting day

Saturday was a full day.

The morning was full of baking & party prep.

The afternoon was the time for the church children's Christmas party.  There were songs, games, crafts, story, cupcake decorating & eating of course.  This year we had several guests from the neighborhood come

Saturday evening was time for the ECS Candle Light Service.  This year we did something a little different, we had a mini carol study.  Jerry shared some of the history behind a few of the traditional carols and how the carols point to Christ.

this was followed by a pot-luck party.

Merry CHRISTmas!!

Yesterday:

• we said goodbye to the oxygen tent!
• Joshy started drinking his formula, 200ml servings, rather than getting it by tube in 50ml increments.  He will start getting actual food sometime today.
• we got confirmation that Joshy's scheduled short stay (respite care) is still a go.  He will be in short stay from Friday afternoon until Sunday evening.
• we were told that Joshy should be released this week.  (Highly likely that he will be discharged on Friday and then move up 2 floors for short stay - but not sure, he might get to come home before Friday.)

Upcoming:

• This is our last week of classes before Christmas break.  We have small parties in all our classes.  Meaning lots of cookies to bake
• Saturday afternoon is the Sunday School Christmas party.
• Saturday evening is the ECS Candle Light Service / Christmas Party
• Sunday morning Bekah is being baptized
• Sunday is also the all church pot-luck / Christmas party

 

Every year the church school,CS, puts together cookie trays to deliver to the neighbors around the church along with information about upcoming Christmas events.  When we were planning this, I said that we would make the cookies.  With Joshy being in the hospital things got a little hectic, but Kei made up the dough and we got the cookies made yesterday while I was at home.  I misjudged how many cut-out cookies a batch would make, so we didn't have quite as many as I would have liked, but it still made a nice, but small tray.

The 3 oldest CS kids, with a couple of young adults, decorated the boxes while the next older kids put the base frosting on and the younger ones added the decorations.

 

After all the cookies were in their boxes, everyone bundled up and went in groups to make the deliveries.  I missed this part, as I needed to head back to the hospital so that Jerry could get to the church for AWANA.

Hospital wise, it was a tag you're it sort of day.  Jerry came this morning so that I could go to church.  Then I came back so that Jerry could go to AWANA.  After evening Bible Study at the house, Jerry will come back to the hospital so that I can sleep at home tonight.  We are going to try to make it so that I am not spending more than 1 or 2 nights in a row, so that we do not have a repeat of Friday.

Thankfully, Joshy slept all night last night!  He had some coughing & was a little fussy off & on, but he never really woke up.  He did need oxygen over night, but today he has not had oxygen and his levels, while still low, are much better.  When the doctor was in he said that J's lungs are sounding much better.  Tomorrow we will have xrays to see how they look, hopefully the pneumonia is retreating.  Joshy also got to have a small amount of formula twice today.  This is the 1st food  that he has tolerated in a week.  I believe the nurse said that he can have formula 3x's tomorrow.  If he tolerates that then we can talk about actual food.  Each positive step puts up one inch closer to the door.

If you happen to have a child who HATES, absolutely, 200%, H-A-T-E-S, having anything on his face or head and you need to have him on oxygen you must get creative.

The fight to keep his O2 levels where they need to be has been a challenge to say the least.  Even being sedated he fights the dreaded mask.  This has lead to a lot of sleepless nights and busy days, especially now that Joshy is feeling better and wanting to sit up and play.    We have tried hanging the mask around his neck, but we still have to keep his arm tied down :/  Plus his levels really are not as high as they should be.

We thought about an oxygen tent, but the hospital only has a small, infant size, tent.   However, yesterday we decided to see if we could make it work.  Because it is small and Joshy's platelets are low, the nurses padded the support poles.      Also, Joshy cannot sit up inside of it, so we are setting the levels high and attempting to oxygenate the bed area.  We are not able to keep his levels as high as we would like, but he is a happier boy.

We are thankful that we are seeing improvement.   Yesterday's labs showed that his white, red, and platelet numbers are holding steady.  Not sure about the other results.  Labs likely will not be run today or tomorrow due to it being the weekend.  LORD willing by the 1st of the week everything will be looking better and we can discuss coming home.  I don't look for a quick release, but I pray he will be home for Christmas.

Yesterday we had another complication - mama had too many nights of not enough sleep.  Not enough sleep + hospital stress gave me a massive migraine.  The best thing to do when a migraine strikes is rest in a quiet, darkened room... ummmm... hospital rooms are anything BUT quiet, especially when you have a child who is fighting an oxygen mask :/  Jerry had his classes, plus inadvertently mine, to cover before he could come to the hospital to take over.  Bekah has a cold so couldn't come.  All I could do was curl up on my cot and pray the room would stop spinning.  The nurses ended up picking up what I usually handle.   I did my best to hang on until Jerry got there, but after I was sick again, they let me head home.  A full nights sleep has me feeling much better!!

I have spent today at home.  I haven't rested as much as I probably should have, but I have tried to take it somewhat easy.  I am pleased that the Christmas gifts we already had have now been wrapped.  With Kei's help we also have cookies baked for tomorrow Sunday School project & frosting made for the cookies, as well as, for next Saturday's Children's Christmas party.  The girls & I also got a little shopping done.

Jerry & I are going to need to get creative to cover classes & Christmas events.  After yesterday's headache, I just cannot be at the hospital every night.  We are going to need to switch off and on more.  Please pray for us.

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!