Back to the drawing board...

Javy's geneticist called today to give me the results from his last round of testing.  The test results that I mentioned in "The Big Doctors Appointment", here's a link if you're interested: http://adventuresinjavyland.blogspot.com/2013/05/the-big-doctors-appointment.html

So all the tests came back normal.  At first, I would've made a flat tire sound here.  When I got the message, I have to admit, I was a little disappointed.  I really thought we were heading somewhere.  But after talking to the doctor, I realized it was really a blessing.  What the doc thought he had iscalled Lesch Nyhan disease.  Its trademark symptom is self mutilation to the point of biting their tongues off and pulling out their eye lids.  People with this disease have to be bound sometimes to keep from hurting themselves.  The doctor said that the uric acid builds up and the toxins in their system cause them to regress.  

I guess, this is when parents with undiagnosed children walk the tight rope.  I was hopeful that I would be able to put a label on Javy and tell people my son has such and such syndrome.  Even become an advocate for that syndrome.  But it wasn't meant to be for us, just yet.  Bottom line is, it doesn't change anything.  We still just got to treat the symptoms and remember not to underestimate him because this boy surprises us everyday.  We got to appreciate everyday that we're given and not taken anything for granted.  To quote my wise mother when I told her the news today, "Good!  We didn't like that one, anyway!"

Yikes! A Bug!

A few nights ago, I noticed that there were a couple of bugs in Javy's bed, right before I was about to put him in it to go to sleep.  Needless to say, he didn't sleep in his bed that night.  He hasn't slept in his bed since that night, because the photos above are of his room.  I'm not sure if its an indication that I have some sort of compulsive disorder or what, but...yeah, anyway.  I had put a rubber flooring in his room because its soft.  Little did I know that would provide the perfect sanctuary for bugs.  It looked like the movie, "Bug Life" under there.  Ants had a super highway around the perimeter of the room and those little water bugs that seem to come from nowhere, were coming in through the crack in the cement.  I removed all the flooring and started prepping it to paint.  Frankly, I think that Javy's room needs to be simple with simple lines, I don't want anything that bugs can hide under.  So I started out just trying to prep to paint the floor then I figured I better take up the trim then seal under the trim.  And since I'm doing all that, I'm going to organize the closet, paint the ceiling and the trim, install a new ceiling fan and maybe remove the trim around the doorway to make it wider for his wheelchair.  Might as well.  I'm not one to freak out about bugs, I only shriek at cane spider because they always do sneak attacks.  But Javy can't swat away bugs. Wouldn't anyone do the same for their child?  I don't really have a compulsive disorder, just a love of demolition.  

Three Little Words

 Javy can say "I love you."  I'm not just imagining this.  I have witnesses-Mom, Aaron, Ryan, Ruby and Hi'ilei, all heard it, too.  But I've been trying to capture it on video.  As most people with children know, this can be a daunting task.

Ohana Patrol

Last night, I got to attend a seminar sponsored by the Department of Health concerning transitions.  Transitions happen to everyone but they are a big deal when you have a child like Javy.  They're actually a big deal for every child, but we don't put that much emphasis on children who don't have physical or mental limitations.  But if you think about it, all parents began preparing their child for transitioning into an adult immediately, when they are born.  Okay, I'm digressing but you get my point.   It's going to be an ongoing until the end of July and I'm very excited to learn everything that I can and I'll try to relate everything that I can in my blog.

Last night was an overview of some of the topics we would be learning about.  I just want to share one thing that hit me.  I am a very lucky and blessed person.  Last night's speaker introduced us to the concept of the Ohana Patrol!  Who should be involved in our transitions?  She had us draw a big circle and put our child in the center.  The subsequent circles were for family, extended family (the ones you can call crying to in the middle of the night, who you can count on, acquaintances (the people you see every now and then and just catch up) and the outer circle was paid support.  I worked feverishly on mine, turning the paper as I wrote names.  When we were done.  The instructor said, "What usually happens for most parents with special needs children, the outer circle has more people than the extended ohana."

I shook my head, "No."

This is Javy's circle:

Javy's Ohana Patrol is huge.  This circle is only gonna get bigger, too.  

One Seventy-Five!

175!  That is how much I weighed today, midday after I got home from work and had eaten one meal and a snack.  That's 88 pounds lost so far and I can finally say, "Only Twenty pounds to go until I reach my goal."  And I know that number will shrink, day by day.  I think that these last ten pounds have been the hardest, but it feels good for them to be gone and I worked hard for it.  So before I present my photo montage.  I just want to add a few words of encouragement.

I was waiting to reach this number before I did another update on my own journey.  I realized about two weeks ago, that I had already reached my goal and everything else after this is just icing.  Now I like icing so I will keep going for the icing, don't worry about me stopping here.  I will keep challenging myself.  155 is my goal because I want to get to a healthy BMI.  The goal I've reached is that I am now able to play and keep up with Javy without losing my breath and being tired all the time. A couple of weeks ago, I took Javy to surf with Kevin.  We got there a bit early so I took Javy swimming to warm him up.  I swam with Javy for almost two hours which is a little bit like water calisthenics-with crab crawls and duck walks. I was used as Javy's own personal surf board which is apparently good for the core.  I pushed him across the sand four times and that's about 130 pounds with his wheelchair.  After Kevin took him away on the board, I was feeling like I should start marketing my Javy workout.  I think it could rival P90X.  But I was not beat, I did not require a day of recovery.  I felt energized.  And another lesson came out of all this.  Afterwards, mom took us out to eat at a local Mexican restaurant.  Having just burned 1,000 calories, I savored every bite of my meal-a mango margarita and a chile relleno.  I really appreciated it and enjoyed it.  I didn't inhale it, like I would've done in the past, taking for granted the flavor.  I don't eat like that everyday but when I do, I can really enjoy it now.

For me it's beyond the aesthetics.  People say I look great, that's fine.  But what I really want them to say, as I push Javy's wheelchair across the sand in my two piece bathing suit is, "Damn, that is a really awesome mom and did you see the muscles on her legs?"

Without further ado, here's a quick photo montage of my journey so far, about a year and a half:

Dec 2011, Right before I started my journey

March 2012

May 2012
About to hike Sleeping Giant
for the first time.

June 2012
Still got some serious rolls

October 2012

February 2013
Right after surgery 

April 2013
I love this pic, because this shirt is a size S.
I couldn't even fit it over my right boob before.

Me!  Today, June 9, 2013

Still got some work, but Hey,
I'm almost 40.  Look what
I did.  

Yes!  I realize there are still rolls, but look at the guns!

I've come so far, I've got more work to do.  But I'm almost 40 now and I've never felt better in my whole life.  I hope this encourages you to go for it, whatever your goal is or what you want to accomplish.  Just gotta start.