Last week was a doozy O_o

Not the best walk/run on Monday morning.  Get back to the car and my phone goes off reminding me that I have a morning class... in 30 min... WAH... I have class?!?!? YIKES!   I am all hot, sweaty, in desperate need of a shower...   I also need to talk to Joshy's teacher.  Manage to talk, shower & arrive at my class only a couple minutes late... only to discover that my teaching bag is sitting AT HOME.

Tuesday, a 3.5 hour lunch with some of the B/C course mamas from Joshy's school - lovely <3

Wednesday, all morning at J's school for graduation practice & a special graduation congratulation party thingy thrown by all the elementary students... It is a totally Japanese thing, that cannot explain well.   Joshy was so happy <3  Then getting in trouble for taking pictures  It's moments like this that I just want to give up trying to figure things out.

Friday, lunch with all the B/C students & teachers, except for Joshy's teacher who had to miss it because her child was ill, st a fancy french restaurant.  Joshy being in C course & his teacher missing the event meant that I had all the responsibility of caring for Joshy.  The other students were cared for by their teachers so that the parents could relax, sit back & simply enjoy.  There was a fun slide show about the 4 graduates (Joshy graduating from 6th grade, 2 graduating from junior high, & 1 high school graduate).  Over all it WAS nice, but after a crazy week it was also stressful.

Attempting to wade through the embassy website so that we can get everything ready to renew the girls US passports.  Discovering that Bekah does not have a valid form of ID.  Figuring out if we can get her Japanese passport renewed BEFORE we have to head to Tokyo.  (YES, it is possible and as of this morning has been applied for )

Most of the week was nasty cold, wet, snowy, blowy weather.  Gray, cloudy, blah....

Between all the extra activities and the nasty weather I didn't get any more walking in, other than the less than satisfactory Monday walk.  It should have been week 2 of my 5k training.  SIGH...

Yesterday, Sunday, was a lovely day.  I made myself get out for a walk.  Walking is good for me, not only physically, but emotionally as well.   Along the way I saw some signs of spring - so refreshing!  I also realized that if these pretty flowers could make it through a rough week of snow & cold, then with the LORD's help I can, too.

Time to start a new week

This is Aplastic Anemia Awareness Week.

This has been a week of remembering.  Going back down that long road we started October 11, 2011.

On Monday, Joshy's teacher brought paperwork that must be sifted through and filled out before the start of the new school year.  Because Joshy will be going to school from April, there are extra forms & hoops to jump through.  There was also a list of things that need to be gathered to take to school.   Joshy needs a basket to hold supplies at school so I dug out the basket he had used before.  I found it filled with things he has used back in the day.

The shoes were 4 sizes too small & the lone shirt was 3 sizes too small.  I guess it has been over 3 years

In the basket, I also found the file folders that were sent back & forth to school; 1 for the teachers & 1 or the school nurse.

The notes on the nurses notebook page, says that he was having many long seizures, refused food & drink, he threw up.  It was at that point that school called and I picked him up and headed straight to the hospital where we ended up staying for 6 weeks before being transferred to the  cancer center where we stayed for another 4 months.

On Monday, Joshy also had a checkup... His labs were the best they have been since October 11, 2011!  His WBC's, RBC's, & Plts were just shy of the normal zone!   Liver numbers are slowly going back down.  Kidney number are still wonky.  BUT CBC's are getting closer to normal.  Some would say he might be going into remission, but doctors don't really talk about remission when speaking of Aplastic Anemia.  Aplastic Anemia is for life.   Even if/when numbers return to normal there will still need to be regular monitoring.   I just know that if we can get numbers close to normal we might be able to come off the immune suppression drugs.  In might be safe to go out more.  The trip back to IN in September might actually be safe!!

Today I read a blog post from another Aplastic Anemia parent.  The stark reminder was there... leukemia, while dreaded, would have been the easier diagnosis.  There are more treatment options and the success rate of the treatment is far greater.  "Today, most leukemias have a 98% percent survival rate. Aplastic Anemia is closer to 70%."

The road has been long.  The road has been rough.  We will always remain on this road until the LORD calls us home.  However, we have learned much along the way.

March is the last month of the school year and always a busy time.  This year is extra busy because not only does Joshua graduate from 6th grade, but after 3.5 years of either hospital or school a home he will be going to school from April.  Yesterday, Joshy's teacher brought an inch think stack of papers concerning graduation & end of year activities or paperwork that needs to be filled out before the start of the new year.  I am thankful that most of Kei's school paperwork was sorted in January, although, I am sure there will be additional forms to fill out because it is a new school year so new papers have to be written.  Fun...um...yeah, right...

Today WAS fun.  Joshy's school has several parent visitation days, 1 every couple of months or so.  Today was the last one for this school year.  I used it as a practice run.  Joshy & I dropped Kei off at her school, then went to his school.  It is going to take some getting used to, but the timing works out nicely.  (Picking them up is not quite as nice, but we are working on a plan.)   The main activity at school was bean fun.  The teachers had covered most of the large classroom with foam squares which were then covered by a tarp.  They had bowls of beans plus all sorts of things to play with in the beans: drums, cups, xylophone, etc.  Some of the beans were heated, some room temp.   Add 12 special needs students, teachers, & moms... it was a FULL, but fun room.

This evening, Kei & I set off for a little bit of back to school shopping.  The teacher gave me a list of things Joshy will either need in his box at school or things that will need to be taken back & forth each day.  It was fun shopping with Kei.  Together we came up with coordinated school supplies.  Joshy's favorite color is red.  His wheelchair is blue with Stitch spoke covers.

The red mini thermos is the perfect size for his morning drink AND it has a lip that he will drink from

It feels good to have a few things sorted.  Maybe I will tackle the paperwork tomorrow...

Back home again in Indiana...

It has been over 5 years since we were back, Christmas of 2009 to be exact....

Fast forward to now.  Joshy's doctor has given permission for a trip back.  Even after his 2nd round of pneumonia this winter, the doctor said we should work toward going.  However, this mama is slightly (?) terrified.  Traveling with a special needs child is no picnic.  Traveling with a immune suppressed, chronically ill, special needs child... GULP!   So to help calm the fears, we are trying to cover the bases.

First Base:

Proceed with PRAYER.

Second Base:

The recent round of pneumonia also got me to wondering if it was a wise move to take Joshy.  I cannot imagine not taking him, but it scares me that he is still very susceptible to illness.   I talked to the social worker at the hospital, who in turn spoke to the respite care coordinator.  Then we spoke to the doctor.  A longer short stay may be possible, but they are not thrilled that we will be out of country.  The primany care doctor did say that if he has contact information & a phone number where we can be reached in case of an emergency, it might be OK.  We also have to have permission from the city because there is a limit as to how many respite days Joshy can have each month.   It is a pretty complicated ball to get rolling, but it IS rolling. as a "just in case".

Third Base:

Tickets... time is passing since we first started thinking about Indiana in September.  Much checking of fares.  Much thought going into transfer points, layover times, etc... wheelchairs & a bag full of medication takes extra time.  Throw in a whole lot of "Are we really thinking about doing this?!?" It has taken time to work up the nerve to finalize tickets.   Today, after 2 international calls & several hours on line, we now have reservations!  Reservations for ALL 5 of us!   We took some advice from a friend and decided to use mileage for Joshy's ticket. Losing miles seemed like a better option then flushing a $1,000.  Come to find out, mileage tickets can be changed up to 72 hours before the flight and they can be put on hold for up to a year.

HOME Plate:

All or part of us will be back home in Indiana September 6th~21st.  Hope to see you!

Spring like day + Joshy in respite care = a long afternoon walk for mama

There is a fairly famous bridge south of us, that I don't get to very often.  Usually at this time of year it is buried in snow.  It is truly lovely in spring

I think some of the plants are a bit confused...

Hope the snow that is in the forecast doesn't hurt them!!

I really think this time around short stay was what it is meant to be - wonderfully refreshing.  There is something to be said about SLEEP, SUNSHINE, and getting out into God's creation!!

BTW ~ Joshy is now home after we found him  O_o  I went into his room to gather his things & when I came out he had wheeled himself into another room - silly boy.

What does one do with a lovely winter Saturday, one of those very rare days when the sun is actually shining.  A day where the youngest is in respite care.  A day that just happens to be the 66th annual Tokamachi Snow Festival, the oldest snow festival in Japan, which just happens to be only an hour away.  Well, naturally you jump in the car and head to the mountains for some fun.

People in the community, along with groups from far and wide, turn the mountains of snow into beauty.  There were 75 snow sculptures this year scattered all around the town.   Plus homes & shops build small sculptures on the sidewalks all along the path between the main festival areas. We only saw a few...

One of the main areas has a Tea Ceremony House .  I would have liked to have had tea, but there was on hour wait, so we opted to just take a few pictures.

Another area had ikebana arrangements.

They also build a snow stage for the main concert event on Saturday night.  (We did not stay for the show.)

Even walking around showed signs of beauty in all the snow.

Lovely, relaxing, Saturday afternoon

Tuesday, Feb 3rd, Kei came down with a headache & fever.

Wednesday, Feb 4th, took Kei to the doctor who confirmed influenza A.

Thursday, Feb 5th, Joshua who had been sporting low temps for several days, added low stats.  Called doctor in the morning & as I talked with the nurse, stats went up enough to ward off an office visit.  Evening, stats dropped and we could not get them to go up.  Trip to the ER & an admit with pneumonia... but no influenza.

Friday, Feb 6th, Kei's temp is finally down.  Joshy received 2 units of red blood.

Saturday, Feb 7th, platelet transfusion.

Monday, Feb 9th, Kei had a checkup and was allowed to go back to school.  Joshy actually felt like sitting up, but still needed to be in the O2 tent.

Friday, Feb 13th, finally spent the day without oxygen.

Saturday, Feb 14th, Joshy gave Kei her valentine's wish... He came home!

Today was Kamo.  Jerry stayed home with Joshy while the girls & I went.  On the way home we stopped at the swan pond.  It was COLD, but a nice little break in routine.

Coming soon... Joshy has therapy & the girls have dentist appointments on Monday afternoon.  Joshy has a cancer center checkup on Tuesday.  Kei needs to go the her doctor on Wed morning.  Joshy has a post hospitalization checkup on Friday.  Friday afternoon ~ Sunday Joshy is in short stay... I think a break sounds lovely!

Digital things are nice.  They work well...most of the time.

However...

Yesterday Joshy caused a hospital wide search for a good old fashion thermometer because digital thermometers just do not register as low as Joshy's temp seems to go...

YES, Joshy is playing Popsicle man again.

At Monday's regular checkup, I mentioned that he has been waking up quite a lot at night really fussy & acting like he is in pain.  A couple of numbers in his lab report were elevated... you know the numbers that are usually normal - there are a few of those.  We talked about the possibility that his gallbladder is acting up (we found gallstones last winter during one of his club med vacations).  Doctor scheduled an echo for tomorrow morning to check things out.

Tuesday, Joshy actually slept... and slept... and slept until I unceremoniously drug him out of bed for a dentist appointment.  Then in the afternoon he was seizy, cold, & sleepy :/

Wednesday morning he seemed cool, but somewhat playful.  However, about school time he started going down hill.  So I took him back to the doctor... which lead to the search for an old fashion thermometer.  His temp was 31C / 87.8F.   One nurse used a laser (?) thermometer, but it didn't record accurately until she switched it to the environmental setting.  Sometimes I think this boy just wants to keep everyone on their toes!!

Today he has been cold - temps in the low 30's - and has slept most of the day away.  This evening he threw up.

Praying tomorrow's echo will give us a clue as to what is going on.  I am also glad they J's regular doctor is in out patients tomorrow, because I AM going to have a chat with him.  One thing I know that needs to be addressed is reflux meds.  The medication he has been on can cause kidney trouble.  In light of all the kidney issues we have been battling, the doctor decided to ween him off of it.   Monday was his last dose.   The extra seizures may not be related.  The pain at night may not be related.  However, throwing up is a sigh.  Throwing up blood is a stronger sign that he NEEDS something for reflux.

As I type this out... thinking through recent events... I am seriously wondering if the restless night could be from the lower dose.  Then when the med was stopped it has thrown him into crisis.  When he doesn't feel well he has more seizures.  Sometimes those seizures strike near his thermostat, which knocks it out of whack.  It takes a good 3-4 hours to reboot - provided he doesn't have another similar seizure during the reboot process...

HMMMMMMM.....

Praying that tomorrow we, A) come home, with, B) a new prescription...

Saturday was Stone Soup Night

Stone soup is a fun, easy event.  This year the turnout wasn't as good as it has been in years past, but we still had a good time.  We set up a gas burner on the low table in the living room, added a pot of water - complete with a stone.  Everyone brought an ngredient and we fellow-shipped as we made soup together.

One of the ladies brought sausages cut into octopus & crab shapes - too cute!!

Add rolls & chocolate snack cake for dessert, we had a complete, & delicious, meal

Next month we are going to try a new event, Valentine's Day Coffee House.  Should be fun!

On Tuesday, Joshy's hematologist gave us the green light for a trip back to the US   There is always the provision that he is not ill, but we are now really starting to plan.   There is so many little details that will need to be sorted through.  It has been 5 years since we traveled last.  Many of the travel dynamics have changed.  My brain is starting to swim!

DEEP BREATH...

We are looking at making the trip September 5th ~ the 21st or there about.  Exact dates depend on when we can actually get our tickets booked.   After some initial searching we are getting things narrowed down.  GULP - 5 international full fare flights is a BIG chunk of change!!    A chunk of change we do not have right now.   I know we have some funds in our stateside accounts, but don't have those numbers at my finger tips.  Trusting the LORD to provide.

DEEP BREATH...

Today, I dug out our passports & skymile cards.  After entering all the info into the computer, creating passwords instead of pin numbers, etc... I now know that we have enough miles for 1 ticket...welllll... we will have enough miles for 1 ticket after this month's credit card bill comes (we have a mileage card).  *I will put a plea here - if anyone has any miles (Delta) they would like to donate to a worthy cause of getting our family to the states for a visit, please let me know    I am thankful that we at least have 1 & am praying for more miles to help take the sting out of the trip.

DEEP BREATH...

Passports... all 3 kids need new passports!  The girls need American passports as well as Japanese passports because of their dual citizenship.  Children needing American passports means a trip to the embassy in Tokyo - GACK!   A trip to the embassy means a day off during the week on a day that is NOT a Japanese national holiday or an American national holiday.  (I really think a job at the embassy might be nice when you look at all the holidays they get )    Bekah is old enough that she could possibly apply by mail (I need to look into that) but Kei has to go in person with BOTH parents... so this also means short stay for Joshy, unless we decide to fork over the money to do his citizenship, too...hmmmmm????

DEEP BREATH...

I spoke to the pharmacist... giving him warning that we are planning a trip.  We will need to have all medications with English labels & information.  (Going through airport security with hundreds of packets of white powder is terrifying!)

The hematologist also knows that we will need a letter in English giving case details in case there is a medical emergency while we are traveling.

I will talk to Joshy's primary care doctor next week because we will need a letter from him as well...

DEEP BREATH...

Other details will have to wait, or my brain might explode!