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...