I have several posts running through my mind, but no energy to getting into written form.   There have simply been too many nonstop days with several more in the forecast.

Speaking of forecasts - there are 2 typhoons heading toward Japan.

I have been watching them pretty closely because we have a trip coming up at the end of the week.  A friend mentioned today that the typhoons look like they are in some sort of dating ritual.  Please pray that they don't get together!  The typhoon that is closest to Japan is classed as "very strong" and  the 2nd typhoon is classed as "strong".  If those 2 "marry" it could be really bad.   There are several areas still trying to recover from other storms this season.  The most recent, last week, left 27 dead and 21 missing.   I think everyone is holding their breath that these storms will fizzle out, sooner rather than later.

Speaking of trips...  Friday is CAJ's fall Thrift Shop.  The plan is for Joshua to be in short stay, while the girls & I, along with another missionary & 2 of her children, head to Tokyo.  However, several things are hanging in the balance.  1st - there is the typhoon question, when will it arrive.  Will it b safe to make the trip?   2nd - Kei had a fever that spiked up to 102.6 last night.  I took her to the doctor today and he was not overly concerned - but it was not one of the doctors that know us and the quirky medical conditions that make up out family.   Joshy has been sleeping more than usual and has been having some cooler days, but over all he seems fine.   3rd - Short stay - there is a good possibility that Joshy will not be allowed to go to short stay because Kei is ill.  Kei's fever is down tonight, but the hospital is very strict, with good reason, about things like this because there is a risk that the person going into short stay will bring in germs, or will become ill, from whatever illness a family member has/had.  This puts the whole ward in danger of illness.

There are several things that need to be sorted ASAP...

but for now...

I am going to go to bed...

after I hang yet another load of laundry.

Sado Island is the 5th biggest island in the Japan archipelago.  Sado Island is also part of Niigata prefecture and is visible from our area on clear days.  Sado has a long, unique history including gold mining & being a penal colony.  Sado is home to the Japanese Crested Ibis (Toki), which is on the verge of extinction.   There was much rejoicing this spring when the Toki hatched eggs!   Sado is also famous for Taiko drumming & round boats.

Sado Island may not be quite as famous for it's 2 day walk each October, but that is what got me there after more than 20 years of wanting to go!   The walk has several options.  One can choose to walk one or both days.  One can choose the length of each days walk - day 1 has a 12k or 24k option and day 2 has a 10k or 21k option.  Mixing and matching to fit your ability make this walk unique.  The first day's course in on one side of the island with the 2nd day being on the other side.  I wanted to give it a try.  Originally, I was thinking of walking both days, but as plans and a group to challenge the walk fell into place, we decided that doing the 1 day/12k was our speed.  (There was also a really good tour deal which tipped the scale.)

 Robin & Nicki, missionaries in Sanjo, plus Fumiko & Yoshiko, my students, & I headed out early Saturday morning.  We needed to be at the ferry port by 7am!

We, along with the rest of the tour - 38 total, took  a jet-foil arriving in time to catch part of the pre-walk show held in a dome made of wood rather than steel.

   

These little ones, who did the pre-walk show, were GOOD!!!

Then it was time to hit the road.

     

We walked along the biggest late in Niigata prefecture, a lake famous for oysters.

 

The course took us through a shrine area.  The carving was amazing!

   

Eventually we made it to the half way point & then on to the end!!

 

After having a lunch box we had just enough time to look at the Toki birds (we did not have enough time to really enjoy the park.)

Then it was off to a hot spring.  The views from the bath was beautiful!  You could see the lake which is separated from the Sea of Japan by a thin strip of land.

Before we knew it, it was time to bid Sado farewell & catch the car ferry home.

It was a long day, but the weather was picture perfect, friendships were deepened, muscles were exercised, & the desire to return to Sado island to explore was whetted.

Sado, I will be BACK!!

Mort Report October 2013

Life goes on, in a whirl of activities.  Blogging has even taken a backseat, but Laura does still blog on a weekly basis, so one can always check out our current happenings @ http://mom2-4.xanga.com/

 

Outreach Events:

Have been planned on a monthly basis, but they have been a little more low key than usual.  Thankfully, as life settles into a routine, outreach events are also getting back to a more normal level.

Events this year have included: Stone Soup Party / Easter Outreach / Open Door at the Enmaichi Festival / English Camp ~ 2 nights/3 days of fun and adventure.  English lessons, Bible Time, Songs & Games, along with lots of rain and some flash flooding.

 

Upcoming events include: Halloween Party (10/26) / Thanksgiving Dinner (11/23) / Christmas Candle Light (12/21).

 

Jerry continues to work with the AWANA Club, while Laura works with the Sunday School program at the church we attend here in Kashiwazaki.  We also participate in other events at the church.

 

Bible Study:  Bible Study is down to 3 regular members.  We are getting ready to start a new book in a couple of weeks.

 

Family:

Chan, our nanny, spent about 5 weeks back in the UK in the spring, visiting family &

working on visa details.  The 5 weeks she was gone, were a sharp reminder to all the

things she did for us.  After her return, the plan was for her to be with us until

September, however, the end of May her father was hospitalized with complications to a

lung condition he had.  On May 30^th, in a few short hours, she made travel arrangements

and packed for an international move.  Chan flew back to be with her family, arriving just

hours before her father passed away.  We miss her being here, but are thankful that she

was able to make it back in time to say good-bye.

 

Joshua continues to slowly strive toward remission of the Very Sever Aplastic Anemia, a bone marrow failure disease.  Weekly checkups, at the cancer center, stretched into bi-weekly, and now monthly appointments.  He is still restricted in activities, but has been allowed a little more leeway, provided we are cautious.   It has now been 2 years that he has battled this illness.  He has not gone into remission, as of yet, but his blood counts are finally starting to show stability and he is transfusion independent.

 

Both girls are growing.  Both girls are also sporting braces. Kei started junior high.  She also started swimming lessons in April and loves the sport.  Bekah is progressing with her high school studies.  She is also learning guitar and enjoys playing in the church praise band when they do specials.

 

In May, we were able to take a 4night/5day family trip, the first time we had been able to get away since before Josh got sick 19 months before.  We rented a cabin at a missionary community in Karuizawa.  It was LOVELY!   In fact, we went again for 2 nights in July and are planning to go for another 2 nights in November.   These short get-a-ways are giving us a much needed, refreshing break.

 

Laura has had some health challenges the last couple of months.  Tests have been inconclusive for blood clots, but the doctor has started her on blood thinners “just in case”.  She is having regular checkups, but is feeling much better.  She has been working hard at losing weight, and slowly but surely the extra is coming off.  She has taken up walking and has started participating in walking events.  She even drug the whole family, Joshua included, on an 11km (6.9mi) walk recently.

 

Jerry is keeping busy & staying healthy.  In August he climbed Mt. Fuji and hopes to turn this into a yearly adventure and a way to reach out to others.

 

Prayer Requests:

• ECS to continue to gain new students to help meet financial needs, as well as, to meet & reach more people for the LORD.
• Out Reach Events & Church activities
• Two men Jerry meets with at the hospital.  Friendship and witnessing opportunities are developing.
• Health, it is very important for all of us to stay healthy because Joshua’s health is still very fragile.  If one person in the family gets ill, Joshua is sure to get it and could very easily go critical.
• Joshua’s blood levels to return to normal.

 

Contact Information:

Jerry & Laura Mort                                     First Baptist Church

5-15 Mishima Cho                                       208 West Market St.

Kashiwazaki-Shi,                                        Pierceton, IN

Niigata-Ken   945-0837   Japan                  http://piercetonfbc.org

mort_fort_japan@yahoo.com            (Gifts for us should be marked for Mort Mission)

joyful3us@yahoo.com (Laura’s)

Two years ago today, I had no idea our lives were about to be turned upside down.

Two years ago today, we had just picked Joshy up from short stay.  We had gone to the Fox Festival the evening before and, because of short stay, had participated in the night hike.

Two years ago today, Joshy came home from short stay with a very swollen & bruised hand.  He had gotten a huge bruise on Thursday, just 4 day before, a bruise that went from knee to ankle.  He had seen the doctor about that, but no broken bones and the plasters had reduced the swelling.  Having another big bruise was a little disconcerting, but he had a checkup scheduled that week, so we thought we would talk to the doctor then.

Two years ago today, I had no idea I would receive a call from school in less than 24 hours, saying that Joshy was ill.  I had no idea that a trip to the doctor would land us in the hospital for what turned into a 6 month stay - 6 weeks in the local hospital followed by more than 4 months in the Cancer Center in Niigata city, almost 2 hours from home.

Two years ago today, I had never heard of Aplastic Anemia.

Two years ago today, I didn't know the Japanese words for white blood cell, red blood cell, platelets, blood transfusion, etc.  I had never watched my child receive a blood transfusion or dealt with a transfusion reaction.  I had never had to watch & wait while a needle was put into his bone to get a sample of the marrow.  I had never seen, first hand, the effect of ATG therapy, like chemo, on a child.   I had never known the hospital world parents of cancer patients face.

After two long years, Joshy's blood counts are starting to show some stable progress.   He still has a way to go - BUT two years ago his WBC's were 700, RBC's were 178, &  platelets were 7,000.  Two years ago, going 2 days without a transfusion was GREAT!    One year ago WBC's were 2,000, RBC's were were 282, & platelets were 14,000.  One year ago going 2 months without a transfusion was SUPER!   This week WBC's were 2,900 (normal is 3,500+), RBC's were 330 (normal is 400+), & platelets were 66,000.  (normal is 150,000+).  His last transfusion was 6 months ago

In two long years we have gone from being hospitalized, to weekly checkups, to bi-weekly checkups, to monthly checkups at the cancer center.    We have gone full circle from local hospital, to only the cancer center, and back to most care being at the local hospital.  We have also gone back to being able to be in short stay (respite care).

Will this next year bring remission?  LORD willing, it will.

Will this next year bring a return to school and more normal activities?  LORD willing, it will.

Will immune suppression therapy come to an end in this next year?  LORD willing, it will.

Will this next year see my fear of a slight runny nose or cough or sneeze decrease?   Will I stop jumping when I hear someone cough or sneeze?   Will I not panic when I have to ride in an elevator or be in a close space with someone who is obviously ill?   I have heard from other moms that these fears lingers, but LORD willing I will at least be able to keep panic at bay.

Two years of living in the nightmare called Aplastic Anemia has come to an end.

Here is to the future.

Only the LORD knows what the future holds, but through it all, I know that the LORD is holding us in Him hands.

Today's Cancer Center trip was more time consuming than usual, but not because of problems!

• Since we knew it was going to be a longer appointment, the doctor suggested we see the dermatologist about the warts Joshy is developing.  Being immune suppressed, he is susceptible to any and every bug.  We have been monitoring the warts, and recently, they have really started to grow and spread.    Josh was not a happy camper, but he endured the treatment.  We have also been referred to a local hospital for weekly treatment until they are gone, meaning we do not need to drive to the cancer center each week.
• Joshy's teacher came and we had a really good meeting with the doctor.
  • From the doctor's perspective, Joshy should be able to return to school for the new school year starting in April.
  • Joshy can go to school this fall, on a limited basis, until the winter cold & flu season sets in.
  • IF, Joshy indeed goes to school next year, he may need to miss most of the winter months.  He will also need to miss the school convocations and avoid being in the halls when they are full of students.
  • The teacher will be talking to the school about Joshy's restrictions and they will work on a plan & decide if Joshy will be allowed back as a "B" course student or if he will need to remain in "C" course with a teacher coming to the house.
  • There is a good possibility that Joshy will be allowed to go on his 6th grade school trip - with lots of precautions, of course.
• Joshy's special med levels were NOT elevated - WHEW!
• Joshy's main levels we monitor were ALL UP!  This is in deed a RARE treat.  In fact looking at the graph for the past year, WOW!

Levels still have a way to go, but the are really starting to creep along in the right direction.  This weeks marks the 2 year point in the battle against Aplastic Anemia.  Joshy may be on immune suppression drugs for a long while yet, but if the numbers keep climbing, like they have started doing, then maybe, there is a light at the end of the tunnel.

I made it home just in tame to take the girls to the dentist.  Things are looking up there as well!

• Kei's upper & lower teeth are now centered... like, even centered above each other instead of being a whole tooth off!!
• Bekah has progressed to having actual wires!  The tooth that needs to move, is moving

It has been a L~O~N~G day.  So thankful that some things are looking up!!

The 23rd トライウオーク (Try Walk) was today.  This year's 11 km course meandered around the countryside in the Nota area of Kashiwazaki.  It was a picture perfect day for a long walk.  This was our 1st time doing the Try Walk and it was extra special because they allowed Joshy to participate, too.  I think the girls would have GLADLY stayed home with him, but it was a nice family outing, at least I think so    The walk will count toward P.E. credit  It was a good healthy adventure And, LORD willing, it will open doors for other special needs persons to participate in future community activities

Here is the walk in a nut shell.

Let's GO...

Check point 1...

 

Check point 2...

Check point 3...

We had to skirt around the main entrance because of the steps.  In the end because of the narrowness of the path, I ended up waiting with Joshy while Jerry back tracked to get our papers stamped.  It was at about this point that the girls got ahead of us.  They ended up finishing the walk about 30 minutes before we made it.

Check point 4 and GOAL...

 

Some fun shots along the way...

 

We passed a 128 year old house...

 

At about the half way point there was a nice little place to stop, rest, & have something to drink - ice cold from being chilled in the river!

The girls take on the walk: "We are never doing this again!"

We will see

A not so good nights sleep... kept dreaming about blood counts :/

A phone call to the cancer center to let them know that epilepsy meds were out of whack...

A doctor reassuring me, that levels should be fine.  (Not sure I totally believe it without blood work, but still feel better about the situation)

An actual morning of school!  Joshy's teacher came.  I was actually home to work with the girls, Kei, especially.

Joshy's teacher brought a platform for school.  It was just a little too wide to go through the kitchen door... easy to solve - take the doors off the track   This allowed for racing up & down the hall!

Followed by spinning in his room...

AND, having the doors off meant that his new stander could go back and forth between the living area and his room as well. (It is just an inch too wide for the door way when the wheels are on it.)  He wheeled down the hall did some laps around the living room and then back to his room where he read a book while still standing all WITHOUT fussing about it!

Izzy arrived and Aki came for dinner.  Then they took Bekah out guitar shopping.  Found a nice, used guitar at a decent price.  Now she can practice for the church praise band without borrowing an instrument.

An actual normal Friday + a good nights sleep ~ JUST what the doctor ordered

This morning the kitchen doors came off again so that Joshy could help Kei make cookies!  Kei loves making cookies and Joshy was quite happy to help

This prompted a decision & a trip to the home center.  Bi-fold door have been ordered for the kitchen doorway!!   In will be a couple of weeks for the doors to come in, but it is the perfect season for the doors to stay off.  While at the home center I was also able to look around and find a new solution to the recycling mess area in the kitchen.  Something that takes less space, but allows for as much or more storage, & is something Jerry & I can both agree on.

 

It is shaping up to be a very good weekend

Children grow.

Growth is necessary.

Growth is expensive.

Sometimes

Growth

Is

Heart wrenching...

Joshua is on more medicines that I care to think about.  Some are for simple things like acid reflux & asthma.  Some are for more complicated things like epilepsy & aplastic anemia.   When you deal with medication, you learn that each fraction of an inch or ounce of growth that occurs causes the body to process the medication slightly differently.   When you deal with seizures this difference in processing makes itself know in no uncertain terms.  I know this.  We have lived with it since Josh was 2.

Medications also react with each other.  Some medications can become friends.  Other medications are enemies.  Some will grudgingly come to a truce, a fragile truce.  A fragile truce that can be broken at the drop of a hat, or the addition of an ounce or two.

Joshua's medication for epilepsy & his medication for aplastic anemia (AA) have been forced to live in a vary fragile state of truce, because, pure & simple, he must have both in order to live.  Joshua's recent growth spurt has disrupted this fragile state and there seems to be an all out war brewing.

At last month's neurology appointment, we adjusted 1 epilepsy medication because for 3 months running, the lab results showed that the drug concentration in Joshy's blood was right at the bottom or below the level it should be.  We have tried not to adjust the medication in order to keep the truce going, but with increased seizure activity, it had to be adjusted.  We increased the amount by a very small amount, hoping to keep a balance.  The next week at his cancer center check up, the AA med was at the upper end of high instead of at the lower end.  Doctor wasn't concerned.

Fast forward 2 weeks (3 if you count the week we waited to get the results)...

Today Joshy's labs showed that the bottom feeder med for epilepsy is 3 times higher than it was a month ago and has now gone from too low to too high.   This, in and of itself, could explain Sunday's seizure/vomiting episode that landed us in the hospital.  We have adjusted the medicine once again, lowering it a fraction.  LORD willing, this will settle things down.

Next week we have a cancer center check - to be honest, I am afraid of where his drug levels will be.   This medication must kept in check in order to promote blood cell growth, while suppressing the antibodies that are /were attacking those same blood cells.  They must be kept in check so that liver & kidney damage is kept to a minimum.  They must be kept in check to keep a balance in tact so that the blood doesn't revolt and move into full blown cancer.

Sometimes growth isn't pretty!

As a side note... Joshy's thyroid seems to be caught in the cross fire.  His levels are low this time.  We did not adjust those meds, hoping that once the other meds call a truce that the thyroid will straighten up and flight straight.

Today 2 of the 4 items we have been waiting for arrived

Joshy's new gait trainer!

This is just like his old gait trainer, except that it is bigger on it's lowest setting than his old one is on its highest setting  It also has a special pad to help support his chest, as well as, a communication tray, which will hold his ipad - COOL!

Joshy's new standing frame...

This is the 1st standing frame of its type in all of Niigata Prefecture   Joshy won't get as bored standing because he can wheel around.  It also has a communication tray for entertainment.   BTW ~ in case you are wondering ~ the frame is made to grow with Joshy.  Right now the wheels look huge, but as Joshy grows they will need to be that big.   Also, the wheels come off to make a more traditional stander (a good thing because with the wheels on, it won't fit through the kitchen door way ).   Kei can't wait to get him into the kitchen to help make cookies

Joshy's new wheelchair also made a preview appearance.

Padding, seat covers, spoke covers... the finishing touches...  still need done, but he got to try it out for size today   The seat covers will be the same blue as the straps in the picture and the spoke covers are Stitch - wonder if he will be as mischievous as Stitch?   Just 2 more weeks and this baby will come home with us  Can't wait to get his old chair back upstairs so that it can be used as a feeding chair!!

The last thing will be ready for pick up Thursday - his leg braces.  Once he has those he will be ready to rock and roll.  Until they come, standing/walking will need to be limited because with his added height & weigh his his skinny little legs, especially his ankles, just aren't bearing weight correctly.

Oh the things it takes to keep a growing boy on the move!!

Happy, playful, mischief maker...

Flip Switch

Seizing, vomiting, lethargic boy!

This is what happened Sunday afternoon.  Joshy woke up happy.  We went to church - he giggled all the way because we went by WIKE and those bumpy bike rides are just FUN!   At home he ate some lunch, although, looking back, he didn't eat overly well, then played until 4:30 when the light switch flipped.

The vomiting came with the seizures... or the seizures came with the vomiting  - not sure on this one.  After 20 minutes of nonstop "fun", I called the ER.  No pediatrician in the ER, but I could bring him in to be seen by an internal medicine doctor, or watch him, try to get fluids into him and bring him in during regular office hours.  Opted the watch and wait approach with emergency seizure meds on board.

The fun slowed down just a little as the lethargy increased.  At 6, after another episode, his O2 stats dropped to the low 90's.  I was just getting ready to call the ER again when the ER nurse called to check on Josh.  (The ERs here may not be top of the line, but the ER at our local hospital tries to make up for it by really going the extra mile.)  I told the nurse to expect us in 20 minutes.  We bundled Joshy up, grabbed the hospital bag that is kept packed for emergencies, packed up his meds, and headed to the ER.

Internal medicine doctor was nice.  Ordered a suppository to stop the vomiting and was on the fence between sending us home & sending up to the 4th floor.  Joshy then proceeded to gag again.  This got the doctor to call in a pediatrician.   Pediatrician commented, that Joshy is always admitted when vomiting... which is true, if he is vomiting enough to need the ER, we always end up on the 4th floor.  I did get the doctor to agree that IF Joshy stopped the nonsense in short order, that going home Monday would be considered.  He agreed & we were whisked up to the 4th floor for on IV and observation.

Monday morning, Joshy was bouncing between playing, sleeping, & seizing.  The doctor doing rounds wasn't convinced that he was ready to go home.  (To be honest, I wasn't either.)  The doctor did agree that IF Joshy could keep his formula down that he would consider sending us home in the evening.  As soon as the doctor left, I gave Joshy his formula, which he tolerated...just barely.  Lunch formula went better, but then Joshy decided he needed a NAP... he never naps when he is well.  Jerry arrived to change places with me and somewhere in that change over process the light switch flipped again.

Back to giggly, happy, playful boy!

I NEED to find that switch

BTW ~ The doctor did release us Monday evening.  So we are home.  However, we still do not know the cause of the problem.  Joshy's tummy sounds & blood work were not indicating trouble.  I am wondering if it were more seizure related that tummy related.  Joshy has a check up with his neurologist this week, hope we can shed some light on the situation.