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!