Carried Away

Children and bags seem to go hand in hand.  They start out needing diaper bags and progress from there.

Fact - Most junior high students need various bags.  Josh is not an exception to this rule.

Fact - Most junior high students carry their own bags without problems.  Josh is an exception to this rule.  Provided the bag fits well on his wheelchair and doesn't slide around so that it gets caught in the wheels, Fhe can "carry" his own bags.  The problem comes when more than one bag is needed and/or when the bag slips around.

With Joshy going to after school care twice a week bags were becoming a problem so the search for something new started.  Diaper bags actually fit his needs better, but the baby motif just doesn't cut it for a junior high boy.  Sports bags are good, but they tend to slip slide around and get caught in wheels.

Hmmmm...

I stumbled across the Skip Hop diaper bag.  It is actually a sturdy bag that doesn't shout BABY. A.N.D it has a special strap that hooks on to strollers, or wheelchairs for that matter.  We decided to give it a try.  

Ready for school! 

And off we go. With either free handles or a place for another backpack to hang on days a second bag is needed!  

Happy Mama!!

Pondering

Five years...

We have been in this house for 5 years now, we move in December 27, 2010.  That 1st June in the house I bought a peony plant and planted it in the garden, all the while anticipating the beautiful blooms it would have.

Each spring I've waited and watched for those blooms.  Finally, 5 years later we have our 1st bloom!

How many times do we wait and wait for something we feel should be happening, but yet it doesn't.  We often get discouraged.  We contemplate throwing in the towel or digging up the plant, as the case may be.  We wonder if our lives will ever bloom again after being disrupted by disaster, or being transplanted.  Then when we least expect it a bud appears.  

There is hope.

  

Manic Monday

Hospital appointments can leave me a bit frustrated, but usually they don't stress me too badly.  This morning, I was ready to pull a scene out of Fried Green Tomatoes!  OK, well, I am not older than the driver I encountered, which is likely why both cars are undamaged...  

Handicap parking spots are limited.  Parking attendants often instruct drivers to crunch together - park on the lines that are put there so that one can load/unload wheelchair users... you know the REASON handicap parking spaces exist - I digress.  ANYWAY...  I scouted out the handicap lot (the big hospital has 8 spots).  There were actually 3 places remaining.  By the time I was able to pull into the lot, there were 2 spots left.  Then the driver in front of me parked smack dab in the MIDDLE of the 2 spots.  I ask her if she could please pull over, she looked at the area and said that she couldn't.  She was older.  She seemed to be having difficulty.  I gave up and went in search of an end spot - which I was actually able to find - Thank You LORD!  

Next up... getting to the dermatology department.  WHY the hospital put pediatrics right in the middle of the hall with dermatology at the far end of the hall is beyond me.  I feel like we are passing through the shadow of the valley of germs each and every time we go.  I attempt make a race track out of the isle on the far side of the hall (the hall way doubles as the waiting area) in hopes the sicker children will be facing the pediatric side and thus the germs will be fewer on the far side.  Today the whole waiting area was jam packed with ill children.  There was no clear course.  There were toddlers and/or mothers blocking the narrow isle...  It felt like a trip through a dark, creepy, garbage filled ally... excuse me, pardon me, will you please move!  It doesn't help that the walk way is barely wider than Joshy's wheelchair - sigh... grit teeth... SIGH!   

Once we ran the gauntlet, we made it for what turned out to be Joshy's L.A.S.T dermatology appointment!!  After going to the dermatologist every couple of weeks for nearly 11 months, the doctor said today that Joshy is finished!  He has a cream to use 2x/day, but there shouldn't be any more visits needed to take care of the stubborn warts.

Immune suppression therapy means simple viruses tend to be hang on for all they are worth!

I am so glad we don't need to go back any time soon.  I'm afraid that if today had been the first appointment we might never have gone back and Joshy would have warts forever.

Oh.And. that nice end spot that gave me room to get Joshy in and out of the car... Someone decided to make a "new" parking space, parking right next to Joshy's door leaving very little space to get him back in the car.

Oh That's Right...

It IS MONDAY!

Numbers

We have long played the numbers game with Joshua.  

When he first came to us, the numbers were connected to sodium.  He was on a very strict diet in order to keep his sodium levels in check without medication.

When he was two and his epilepsy began to rear its ugly head, the number game moved in the direction of medications in his blood stream.  Trying to keep the meds in optimal range in order to control the seizures.

Four & a half years ago when Aplastic Anemia (AA) & all that entails, became part of our vocabulary the number game expanded.  The fight to keep his blood cells out of the basement.  To keep them above the magic "need a transfusion" line.   In all these AA years when Joshy has gotten ill his numbers have tended to bottom out.  

In the last year or so his white cells have started to make tiny bounces up when he has gotten ill.  Last week, when Joshy was in the hospital with the beginnings of pneumonia, his white cells went sky high.  This was a 1st in his AA life and, to be totally honest, it terrified me.  See 35-40% of AA patients end up getting leukemia.  Labs at the end of the week were starting to level out which was a relief.  Today, at Joshy's monthly check up at the Cancer Center, his number game showed...

Numbers are...

Returning to "Joshy norm"!  White cells are back down to their just below normal range "normal".  Red cells & platelets are back up to where they were a couple of weeks ago.

Basic breakdown - because we are weaning off the immune suppression medication, Joshy's white cells are free to react to  germs.

And so the number game continues!

Lunch Time

I am trying out a new app on my phone.  Still need some practice!

I had lunch with this guy.  He seems to think he is pretty tough stuff and too good for hospital food.  I'm not surprised because he eats/doesn't eat in turn.  He did drink his formula, so all is well... normal.

BTW ~ His flirt is back - He was up most of the night entertaining the nurses! 

I will be heading home shortly to get him more clothes since he has gone through everything we brought... Silly boy!

Curve Ball

I should expect it, I guess, but a curve balls always catch me off guard.  

Last week was Golden Week.    The kids & Jerry had school/classes on Monday & Friday, but ECS was closed all week.  We didn't have any big plans, a little hiking, some time at the park, some quiet.

 

This week, one class started up again, university classes are in full swing.  The first Friday night game night was happening.  The Sunday School kids had rice planting scheduled,... typical full week with a few extras thrown in for good measure.

Perfect week for...

Joshy to have a fever... YES, he actually had what a normal person would call a low grade fever rather than a temperature that wouldn't register.

Add high heart rate & low oxygen rate plus vomiting a little bit of blood...

Wednesday found us at the hospital.  Blood work & an X-ray later we found ourselves in a room on the 5th floor.  Eight pokes after that an IV was finally in place.  

Wednesday is my busiest day, but it is Jerry's free day, so daddy got to handle the blunt of it.  I was there for the initial consult, then walked them down to X-ray before hurrying off to the dentist to have my temporary filling, that was falling out, replaced.  I made it back in time for the 2nd consult and to take part in the debate - do we admit or fight it at home.  I stayed with Joshy while Jerry went home to pick up supplies: meds, diapers, etc.  Then daddy got to be the mean one who helped the nurses attempt to get an IV going while I headed off to work.

Joshy's labs truly scared me this go around.  His white blood count was HIGH.  He has not had an "H" after his WBC's in nearly 5 years.  Even when extremely ill his numbers have barely gotten up to the mid normal range.  Having WBC's almost double normal was terrifying.  With Aplastic Anemia there is a 35-40% chance of going into leukemia.  On Thursday, I talked with his regular doctor who was not overly concerned.  Yes his WBC's were high, but...ummm... normal people do that.  In fact, the doctor thinks it might be an indication that his WBC's have finally recovered.  (I am still a little anxious to talk to the hematologist at the cancer center about all of this.)

The IV that was so hard to place was also short lived.  Thursday evening the site failed.  Joshy was showing improvement so they didn't attempt to replace the line that night, but rather waited until the doctor checked him on Friday morning.  Friday, the doctor ordered labs.  The short lived IV had gotten enough of the heavy duty meds where they needed to be to help Joshy turn the corner.  Counts were looking much better, so a switch was made to oral antibiotics.  In fact, he could have probably come home, but he will stay put until Sunday evening.  See the plan had been for Joshy to be in short stay Friday-Sunday.  Being ill / having an IV cancels short stay.  It is complicated, but he is sort of in short stay... we can't leave him there the whole weekend, but we don't have to be at his side all day either.... confused yet?

Semi-short stay, meant I could come home for supper Friday night.  It meant that I was home got the first Friday Night Game Night.

 

It also means that I can sit and blog this morning instead of rushing to the hospital in time for morning meds.  It means I can go to the grocery store, too.  I will be at the hospital before lunch.  I'll feed him lunch & hang out a little, then I can come home in time to fix dinner.

I am thankful the curve ball wasn't any worse.  I am thankful that God had it all in hand.

Just Another Morning

It's Friday morning.  The children have been dropped off at their respective schools.  Jerry has gone to work.  I find myself home alone, with a little bit of time to reflect.  I thought I would give you a peek into just one of my before school, morning activities.

Renraku Cho (れんらくちょう・連絡帳)  ~ Google translate calls this a "contact book".  It is basically a book passed between parent & school in order to keep everyone up to date on happenings, health condition, etc.  Thankfully, Kei takes care of her own - I can slip a note in to the teacher if the need arises.  Joshua, on the other hand has not one but TWO for school & on days he goes to after school care he has a third for the care center.  

The two contact books for school includes a file to/from the teachers and a file to/from the school nurse.  The nurse's has places to record morning stats, BM, food, any health concerns, etc., plus there is a pocket for his afternoon meds.  The nurse in turn will make notes of any health related care, i.e. meds given, she does throughout the day.  The teacher's file has a place to write any pertinent information,   For example, there was a 3 day holiday this week so I included that we went to the park.  I also told the teacher about upcoming medical checkups that will cause him to be late or absent from school.  Because the teacher meets us at the car, I can also tell her things which saves me needing to write everything down which is a huge help.  The teacher in turn will tell me what activities he does, how he is acting, wet/dirty diapers, seizures, etc, just simple notes to keep me in the loop.  The contact book for the after school center is very similar to the school nurse's file.  The three together look like this...

They are all in Japanese.  More often than not, I use my cell phone medical dictionary, messenger to double check kanji (Chinese characters), & sometimes google translate, depending on any strange antics Joshy might be up to, & Kei to make sure my Japanese doesn't sound too crazy!

For after school care Joshy has a backpack which holds a change of clothes for after bath, his special bath soap & lotion, basic medical supplies for his g-tube in case meds need to be give, diapers, & his contact notebook.

For school, his back pack includes his emergency meds case, any supplies that need to go to school, his lunch, his morning drink (which was left sitting on the counter this morning - OOPS!), & the contact files.  

With that he is ready to go...

Some days the chore of getting Joshy to school is overwhelming.  I simply need to remember that  once his bags are packed, meds are given, he is up, dressed, etc, etc, etc... I might just have a few minutes to sit and reflect... ahhhhh. 

New

April is the time for change...

New school year...

Kei is now in high school, at the same school, but in a different department & wing.  She is adjusting to several changes that come with the transition to high school life.  There are more students in her class.  She is now allowed to walk home.  She has all new teachers, plus a whole new schedule.  Much to take in for my girl who doesn't like change.

Joshua has some change, too.  His biggest challenge, at school, is a new male teacher.  Joshy is a flirt and loves the ladies.  He is not a big fan of men.  He did OK with the male teacher last year (the school likes to have at least 1 male teacher in the junior high/high school room(s) to help with lifting) but he is not so sure about the new teacher.  He will be chatty until the new teacher comes and then he sits quietly.

Mama also has some adjustments because both schools have very different ways of doing things.  Differences in PTA responsibilities, parent teacher interaction, etc...  However, both schools seem to want to denude the country of trees with all the handouts they are sending home.

New after school "Day Service"...

Joshy started going to a day service facility 2x/week.  This particular service will pack him up at school, transport him to the center, give him a bath (something that is becoming harder to do at home), and then either keep him until I can pick him up after work or bring him home on the day I cannot pick him up.  Some of his friends from school go to the same facility and he seems to be adjusting well.

New physical therapist...

I am thrilled that the therapist Joshy had 5 years ago has been transferred back to "our" hospital and is now , once again, Joshy's therapist.   In the 4 years Kiriyama Sensei has been gone, the whole therapy wind was moved, the old wing torn down and rebuilt into a state of the art therapy wing.  Joshy has also changed significantly, so there is quite the learning curve, but this is one change I am thrilled with!

New classes...

Jerry has new students in his university classes.  He also has a new company class.  I have a new preschool class starting as well as new students in my insisting preschool classes.  I also have 3 new classes at ECS.  

New outreach areas...

We are starting a monthly game night for high school through adult students, especially focusing on reaching university students.  The first game night is coming up next week.

We have also gotten the International Bible Study up and running on a new night.

Monthly events, Sunday School, & AWANA responsibilities continue, but there have been some slight changes there as well.

New neighborhood responsibility...

In the time we have been in Japan we have managed to avoid being neighborhood leaders, however, this has now changed.  Our lot was drawn.  Jerry now has neighborhood meeting to attend, neighborhood fees to collect and turn in, city & neighborhood information papers to distribute twice a month, garbage patrol to do, etc...  It is a good experience, but comes with a huge learning curve.

Is it any wonder this meme struck me in a very real way?