Cruizin'

I was driving home, just now, from Salt Pond.  I passed this girl, I've seen her around before.  She obviously works at McDonald's because she is always wearing a uniform when I see her.  She inspires me.  She walks to work.  Not only does she walk to work, but her gait is not straight.  One of her legs always stays straight, while she swings the opposite arm.  I've seen her all over Hanapepe, but from where she was today, now I know her walk to work is about a mile and a half, and includes a pretty tough hill.  I came pretty close to offering her a ride, but I stopped myself.  I wouldn't want anyone to give me a ride, I'd have my earphones in and be cruizin', too.

I want Javy to walk, too.  No matter how he does it, I want him to do it.  Not necessarily because he wouldn't need his wheelchair anymore and his life would be easier.  No matter what, he'll always have mobility and access to most things.  Those days of being bedridden and in an institution are over, thank God.  No, I want him to cruize on his feet because I think that he would think it's fun.  I believe he'll get there one day, it  may be funky (in a good way) but he'll get there.

I made this video Sunday of Javy trying to stand up.  It's kind of hard to see because I was right beside him.  But the remarkable thing was that he was pulling himself up with his legs and not hold onto anything.  

Lesson 2 - Get Yourself a Plan

For Javy, planning is easy.  He sees what he wants, he moves forward.  Sometimes, things aren't going the way he wants.  He looks around the room, sees who is around.  From experience, he knows what methods will work to get what he wants.  If its grandma, he'll wheel himself over to her and make with the eyes, maybe he'll let out a little sweet whine.  Grandma says, "Oh, I know what you need, a cookie."  If it's me, he doesn't fool around-just goes straight to the fussing so the only thing I can do is stick a cookie in his mouth.  (He knows I'm dense)

So what's my plan?  First, what's my problem?  I'm overweight with a bum hip and fear the ocean.  Easy-Start with losing weight, that'll help my hip, then as I become stronger, I will feel more in control in the ocean.  Sounds like a game plan.  Anyway, it's what I'm going with.

I'm still in the phase one part of this plan.  Did I mention that I'm 54 pounds lighter (as of today, June 16th, 2012) than when I started this excellent adventure?  So I've had success.

At first, way back in January, honestly, I didn't really have any plan.  I just started bringing my lunch to work everyday and doing a little exercise when I could.  You see, I have a basic policy: I don't do anything that Javy can't do with me while he's home.  That means if anyone invites me to do something, I won't go unless Javy is at school or asleep or its an activity he can enjoy.   I don't waste my time or my money at a gym.  I don't date, I don't splurge on "me time" at spas.  Well, wait a minute, I do have "me time", it's called going to work.  That's my personal decision and I'm much happier with myself for making it.  I have done all those things in the past - wasted time away from Javy to spend with some guy, got my hair and nails did at some fancy salon.  Basically, for me, I couldn't relax and enjoy it.  I love every minute that I spend with Javy, well, maybe not so much when he's whiny and fussy, lol.

I wish I could describe to you, how depressed I was because I really couldn't see any hope.  I remember watching an episode of the Biggest Loser, thinking, yeah easy for them to lose all that weight at a resort with no family or real life distractions.  I was probably eating ice cream or drinking rum or a beer, my F-You attitude.  But I did, eventually, get on my knees because when the pitiful human brain can't summon any hope that means it can only come from someone much stronger than my pitiful human brain.

I was on a day shift at work when I first went into action so there was no going for long walks after work. I bought this mini-stepper at K-Mart, because something is always better than nothing when it comes to weight loss.  My first time, I could barely make it to two minutes, I was so out of shape.  Then one day at work, totally out of the blue, a co-worker noticed that I was eating somewhat healthy.  He mentioned an iphone app called "MyfitnessPal".  I downloaded it right there in the break room and I haven't stopped using it since.  I just log everything into it that I eat, you can even scan barcodes of products.  All I gotta do is just make sure that I eat the correct proportions.

And there you have it: A Plan.  I mean it's not rocket science, you eat less, you will lose weight.  But the key to my plan is my resolve and I really don't know where it is coming from.  It must be supernatural-it's stayed with me for 6 months.  Failure is not in my future plans, either.

But I don't want this to be a blog about weight loss.  It's about following your dreams, conquering something that has evaded you.  It's about learning to surf.  I'm about half way to my weight loss goal and I've already conquered so much more.   

The quandary of sleep

Sleeping is a pretty basic thing.  Everyone does it, no matter their abilities.  It's one thing that I never thought I'd have to worry about for Javy and it was a surprise to find out that I did need to worry about it.    And it's not really the sleeping part I have to worry about, Javy has no problems with the sleeping part, either.  The question is where does he sleep?

You see, he can sleep on a normal bed but there's always the risk that he'll fall off or climb off (which he does).  In the past, I've just put the mattresses on the floor.  That way if he falls off then it won't hurt too much.  But then there's the problem of getting him in and out of bed.  Javy weighs over 75 pounds and he's over four feet tall.  That is a recipe for a bad back.

So last fall, I thought I was being clever when I asked the Shriner's doctors for a prescription for a hospital bed.  I found out from the local medical store that insurance pays 80% of the cost for a hospital bed.  The sales rep took the prescription, got my insurance info and then she said she would call and let me know when everything was approved.  I walked out of the store, kind of puzzled... Don't I get to pick something out and let them know what we need.  I wasn't expecting an Ikea warehouse, or anything....   Maybe, at least, perusing through a catalogue.

Nevertheless, my optimism did not falter.  A few weeks later, Gammie's Homecare called and wanted to set a time up for delivery of the new hospital bed.  We were in transition ourselves so I asked if I could wait until we got set up in our new home.  Meanwhile, my mom convinced me to go back to the store and at least see what they would be delivering.  And yep, it was a basic hospital bed.  I told them that this would actually make it more dangerous for my son  because he would climb over the meager railings.  I told them that I was hoping for something that raised up and down for easier transitioning from bed to chair or floor but with more substantial railing.    Something like this: http://kayserbettenus.com/ida.html.  Nope, they didn't sell those.  I asked about getting some other kind of railings for the bed that they did supply.  Nope.  So I cancelled that order, no use going through all the trouble for something more dangerous.

I researched some of the pediatric beds and they actually do take insurance and even give step by step instructions for getting insurance to approve them.  I was really excited, I thought I could circumvent the system.  I called Javy's nurse and she readily agreed to help.  She called the company, but they don't sell directly to patients, it has to go through a medical supply store.  And guess what, Gammie's Homecare isn't one of them.  The nurse found a couple of companies on other islands that they would sell to, but these stores didn't come to Kauai.  (Javy has the greatest nurse because she did all this research on her own.)

So we were back to putting the mattresses on the floor and at least if he fell off, then he wouldn't fall too far.  But then the centipede incident occurred and I learned quickly not to put mattresses on the floor here.  I have two twin beds that came with the house.  I set them up side by side in my room and created this huge bed.  Javy began sleeping in my room, with the mattresses off the floor.

It finally occurred to me, what the heck, are children with special needs not entitled to a good nights rest or at least their mommies.  So I asked a couple of mommies of kids with limited mobility issues, who'd been at this for awhile.   My survey results were as follows:  Their children slept in the same beds as them.  It was kind of crushing because sleep is at least one thing that Javy can do on his own.

On the other hand, I actually found that I slept better with Javy next to me.  I was sleeping without worry, I didn't wake up at odd times in the night to check if he'd fallen off or been carried away by centipedes or changelings.  It was kind of nice.  However, the novelty soon faded as I began waking up to feet and a head in my back.  And I just wanted to be able to turn a light on and read before bed.  It's the little things, I know.

In the meantime, we began fixing up Javy's room.  I put rubber flooring down in his room, painted and sealed the room better.  I'm proud to report that Javy is now sleeping in his own room.  I put one of the twin beds in his room and he has not fallen off.  I still wake up every now and then to take a peak, but it's worth it.  He's independent.

Lesson 1 - Get Your Head in the Game

 "Ya gotta get your head in the game, Mom!"  That's what Javy says.  Well, he didn't really say that, I mean, if you know Javy, you know that he's nonverbal.  But being Javy's mama, I've become proficient in the Javy-ese and that is my interpretation of what he said.

I watch Javy.  When he is being made to do something that he has no interest in, his head goes down and he starts to giggle.  The other morning, when I dropped him off at school, I decided that it was time for him to push himself to his classroom.  I pushed his wheelchair onto the sidewalk and said, "Ok, Javy, let's head to class.  Straight ahead."  And I took my hands off his wheelchair and began to walk toward the classroom.  I look back at Javy and his wheelchair had not budged an inch.  Coaxing only made him giggle.  I got all excited when he finally put his hands on his wheels, but he only did that so he could dance, rocking back and forth.  We did the hand over hand method the whole way.  When we got to the slight incline, he did began to push himself, but only so he could roll down the hill.  Yeah, it was about a 20 minute walk.  We could've walked it from home, faster.

But crinkle a bag of cookies from across the room and see how fast he can get to you.  When he's swimming, he's unstoppable.  His arms and legs are moving.  And his game face, watch out, when he has his game face.  He's unstoppable.

Last summer,  I decided that I wanted to surf with Javy.   I decided to lose weight.  I came up with this plan where all I had to do was lose 3 pounds a month and by the time I was forty, I would be a normal weight.  I started this on my birthday, in August, when I turned 38.  The first month I cut out beer and I did lose my goal weight for the month.  My starting weight was about 245.  Four months later, I weighed 263 on New Year's Day.  The problem, my head wasn't in it.  When stress and life started slapping me in the face, I had no other coping mechanism but the one's that I had counted on for thirty-eight years-chocolate, grease, salt and sleep.

This is me, last summer about 245ish.

This is me, around January 2012 about 263ish.

Oh, boy, I was depressed.  But I couldn't see any way out of it.  I looked at my circumstances-I work eight hours, I came home and took care of Javy.  When he went to bed, I went to bed because I had to do it all over the next day.  It felt like being thrown in a hole and the only tool I was given was a shovel.

 I did start cooking a little healthier and I bought a mini-stepper so I could do a little exercise while Javy played.  The first time I tried it, I only lasted two minutes.  But something is better than nothing, I always say.  I resigned myself to the fact that these were my circumstances and I would just be a big person for the rest of my life.  At least, I have my good personality and nice face, damnit!

Then the big moment came.  My mom had a doctor's appointment with an orthopedic surgeon to see about having her hips replaced.  She had them X-rayed and they are pretty much bone on bone, both sides.  It's pretty much a miracle that she can even walk, the doctor said.  That's when it hit me like a herring in a Monty Python skit.  If I don't do something now, I'll never surf with Javy.  This hip thing is genetic because mom's dad had it and his mom.  And my prognosis would be much worse than theirs because I've been more inactive and I'm heavier than they ever dreamed of being.  

Five months later, I haven't looked back.  My success has come from fixing my mind, first.  That's what I failed to do all of those years before.  I thought if I lost weight then everything would be perfect and I'd be beautiful and happy.

I haven't had any desire to fall off the wagon or revert back to my old ways.  When I feel stress, I'm prepared.  I have alternative ways of dealing with it now.  Not to make anyone gag, but physical activity is the best way to deal with it for me.  It's my way of telling my body that I have control over it, not the other way around.  If I can handle that then I can handle any problem.   Also, herbal teas are a great way to reduce stress, too, especially kava.

This is me now, at about 217. 

Coming soon.....Lesson #2: Javy says "Mom, you got to get yourself a plan."

Introduction

I am not a remarkable person!  I'm actually kind of boring, or rather simple.  I wouldn't read about me, there's really not much to me.  According to Facebook, I've lived in three place: Texas, Alabama and Hawaii.  (Shhhh, don't tell, but I also lived briefly in Maryland and Virginia.  But I don't want Facebook to know lest I get offers to join groups like "You know you lived in Maryland....Which would certainly include, "if you had to run home from school everyday dodging bullets")  I've been a civil servant for fifteen years, third generation civil servant, at that.  My bachelor's degree is in geography and history, for crying out loud.  Run away!

But I did do something remarkable, once.  I gave birth to a most amazing person (You can read about him in my other blog, Adventures in Javyland) and he's teaching me how to surf.

The idea came to me one day, last summer, while I was watching Javy surf that I too, wanted to surf and be free like Javy.  The problem: I'm a strikingly obese person, with a bum hip, a pinched nerve and a healthy fear of the ocean.

It's been almost a year since I conjured up this dream.  I've had some success and some failure.  So despite my boring, painfully plain life, I hope that someone will get something out of how my son has whipped me into shape.  But you've been warned.......

Summer fun and Seizures

As summertime descends upon us, the roller coaster of life has started up a steep incline.

Javy started having seizures, again.  He almost made four years since his last seizure.  In fact, in July of 2010, he had an EEG and was found to have no seizure activity so the doctor took him off seizure meds, entirely.

Seizures suck, in case, you didn't know.  Javy had his first seizure in August 2005, or the first seizure I had ever witnessed.  It was the day after Hurricane Katrina hit New Orleans.  We were in Northern Alabama at the time and we had storms all night, from the remnants of Katrina.  I had woken up early, concerned about the possibility of severe weather.   Around 5:30am, I was passing by Javy's room on my way to the bathroom when I heard Javy make a grunting noise.  I went in to check on him.  His eyes were half open and his tongue was sticking out with foam coming out of his mouth.  His arms and his legs were moving up and down.  I had no idea what was going on, I thought he was dying.  I lifted him off the bed and carried him into the living room (probably not the best thing to do, but I had no clue he was having a seizure), crying the whole way.  My mom had no idea, either.  I called 911.  We waited while Javy's whole body twitched to it's own unique rhythm.  I'm pretty sure that was the longest five minutes of my life.

The ambulance came and Javy's body kept twitching.  I heard the EMT say something about a seizure.  Seems like I rode in the front of the ambulance, but I don't remember.  I remember it was raining and windy and we had to go around some fallen limbs in the road.  But what is burned in my memory is what happened when we got to Huntsville Hospital's ER.  I came around to the back of the ambulance, Javy's body had stopped twitching and he was crying.  The EMT handed him to me, but he looked at me like I was a stranger and just screamed.  Nothing I could do could console him.  Later that morning, he fell into a deep sleep and woke up a few hours later, like nothing had ever happened.

What we learned later after spending some time in the ER is that Javy had a grand mal seizure or tonic clonic seizure, as they are known now.  The reason he didn't know who I was after the seizure was because he was going through a postictal state which is marked by confusion and memory loss.  It's kind of like the brain's way of healing itself from the trauma of the seizure.  Sometimes I wish I could go through a postictal state.

Eventually, we became old pros of seizures.  They usually occurred while he was sleeping, in the early morning hours.  They were controlled pretty well by meds.  When he started outgrowing his dosage, he would start having them, again.  Then a couple of years went by and he never had any and the good neurologist decided it was futile to take medication, anymore.

Not taking medication was a huge relief.  First of all, it freed up a few extra dollars and it freed up our mind.  Javy doesn't take medicine easy, so we always had to plan, keeping something on hand that Javy would swallow his pills with.  Jelly works best.  So if we wanted to go out or travel, we had to carry the jar of jelly with us.  Secondly, we found that after the medication had left his system, Javy became a new child.  He was much  more alert, making eye contact more.  He began pushing his wheelchair around on his own.  There were less episodes of him just slumping over in his chair, giggling uncontrollably.  

I'm glad that we believe in enjoying the moment, because they're back!  It was nice while it lasted.  Why are they back?  Well, that's a good question.  Javy's pediatrician says that sometime children who seem to outgrow seizures starting having them again when they become adolescents.  Yes, we can all thank hormones!

Javy is back on Keppra and today was his first day on his full dosage.  He had three in less than a month.  One was a tonic clonic, just like the old days.  The other two were kind of new.   It was like an absence seizure, but his tongue twitched.  My goal is to keep his life as normal as possible and try not to have the attitude of, "Oh well, he's on seizure meds so if he's a little tired that's understandable."  I don't know if it will work, but we gotta stay positive.  He's made great strides and I don't want him to lose any of it.  Only time will tell....

A Remarkable 10 years!

I realize that some of you, who follow this blog, may not have known Javy since he was born.  So I wanted to introduce some of Javy's baby pictures.  Now I could just post pics, but that's not my style, noooooo!  Of course, I had to make a movie, because I love my iMovie software.  My goal is to show his growth, his progression and, also, his regression so you can become even more familiar with Javy. One more thing, the music is Javy's choice......