Spring Break Part 2

Spring Break is officially over.  Better finish our exciting adventures.

We left off, in part 1, with the doctor's visit.  The abbreviated version goes like this:  we ate met up with good friends, had a fabulous dinner, rode out the Tsunami warning on the 24th floor of a hotel in Honolulu, flew back to Kauai the next morning and hibernated the rest of the day.   Javy went surfing w/ Mr. Ryan (I had to work) on Saturday w/ KORE (still waiting on pictures).  But I was told that Javy's favorite surf guy, got him to stand on the board twice.  On Monday, my vacation began, the first of 10 glorious days.

Basically, we vegged out.  Went to Salt Pond, twice.  On Tuesday, the current was really funky.  The ocean is a funny place, not haha funny.  But the waves can be really high, but as long as the current isn't funky, I'm cool with it.  I don't like being in the water with Javy when I can't control myself.  We went, again, on Friday.  The water was a little too chunky and brown for me, so that was a short trip, too.

We did get some fishing in.  Well, more like, a game of let's see how long I can keep the shrimp on my hook without losing it on the rocks.  I got good after awhile, and managed to keep the shrimp on my line after 4 casts.  The crabs ate well, anyways.

Here's a photo montage of all the good times:

So tomorrow we're off to Koke'e for Javy 3rd Grade Class Field Trip.  I don't have to return to work until Friday, but technically Spring 2011 is pau.  

Spring Break Part One

Soooo, it's about time for a new update and there's a lot to talk about.  But I've got writer's block.  I've been thinking about what I'm going to write all day, we've had a busy week. I waited and waited, waited until we got back from Salt Pond, waited until after we ate supper, waited until Javy went to bed.  Now, I'm here... all alone,  no distractions and nothing.  So I might as well just start typing.

First off, the week (my weeks run from off days to off days-Wednesday to Wednesday, btw) began with a barbecue at Salt Pond with friends.  Javy stayed in the pavilion and chillaxed with the ladies.  But he also had time to do some downhill slopes.

Then on Thursday, we had to take the first flight out to Oahu for Javy's Dr.'s appointment, just to refill his baclofen pump, nothing major.  We have to make this journey about every two months and we have our routine pretty well down pat.  First, we arrive at the airport.  The Hawaiian Airline's employees on the Lihue side always take care of us, they give us 4A & 4B, the two-seater side of the handicap aisle (or the Portugese first class, like I heard one man say on our last flight).  I make sure to snap all of his straps together on the wheelchair so that when they put it under the airplane none of them get broken (learned this from experience).  Since Javy isn't strapped down, I run him down the jet bridge with the wheels tilted up, park him, pick him up and carry him to the seat.  For 20 minutes, I can relax.

Once the plane lands, everybody stands but us, we have to wait for the wheelchair.  So I watch through the window.  As soon as I see it coming up the stairs, I put the backpack on and unbuckle Javy.  I look at the aisle and wait for the slightest gap.  I grab Javy and make a run for it.  The flight attendants, usually make some sort of noise at us, kind of like, "uh"and I just keep going cause I know it's out there.  Strap him in and run up the jet bridge.  Why the rush, you say?  Well, I usually change his diaper, because I know that the airport has at least one surface in the women's bathroom that I can use to change him.  Then we have to catch the bus, which is usually every half hour.   When the bus stops at King and Punchbowl. we watch as all the people try to ambush the bus to get on, while the bus drivers starts to let down the wheelchair ramp.  Depending on the weather or time, we run or stroll the two blocks to Queens hospital.

Have I lost your interest, yet.  Well, this is a blog about bringing awareness regarding people with special needs and undiagnosed disorders.  These are the things I have to think about and it's taken almost three years for me to get this routine down to a science.  The first trip we took, I didn't know about the buses and we took a cab to Queen's.  It cost $30.00.  But I think I want my greater point of all this to be that I really don't think about it, too much.  It's just how it goes, as parents we always have to think and prepare, there's just a little bit more extra planning that has to take place with Javy.

Well, we made it to the Dr.'s appointment.  Of course, the doctor was 30 minutes late.

I think I'll finish our adventures tomorrow.  It's getting late.  

Cruizin'

Wow!  So much has been going on these last couple of months, I can't believe it's already March.

Some updates on what's going on with us:

Javy had some testing done (I spoke about it in an earlier blog about the visit with the geneticist).  He had a renal and heart ultrasound, both of which, were normal.  He had his eyes and ears checked and everything seems good with his hearing and sight.  He also had some blood work done for some specific genetic tests, like fragile x and some metabolic disorders.  All his tests came back normal.   When the genetics counselor called, she explained that one of his blood tests came back high, which could indicate some other stuff that they want to test further for.  I'll give more details when they send me their report, so there's still hope of finding something before his next annual visit.

Javy still keeps improving, though.  He's pulling himself to standing more.  He's more alert and paying attention.  He knows when the bus is coming to pick him up before it gets here, because he hears it coming down the road.  And we have some good news:

My friends diligence paid off in his continuos effort to find a gait trainer for Javy.  He bid on this gait trainer, which is the exact model that Javy's school PTs had recommended for him, and got it for $726.

And my other friend, chased down a man with a double jogger stroller and asked if we could have it.  He was taking it to the thrift store, anyways.  It's in pretty good condition and with some modifications, we can make it into a cruiser for Javy so he can go off-roading and beach strolls.  I have to give credit where credit is due, though.  All of these things occurred without me having to lift a finger.  Well, I did go to the bank and withdraw the money that was in the savings account that we had been blessed with over the last few months.  Thank you to everyone who contributed and sent prayers our way.

So now we're just waiting for next week, we have a trip to Oahu planned, then it's Spring Break and then a camping trip to Koke'e.

God bless