Here's to our health!

I've got something on my mind.  Today, I had some tissue taken from a thyroid nodule in my neck.  I want to post this, before I find out the results.  I know it's no big deal, thyroid nodules are quite common and it will be benign.  But it's still has kind of shaken me up, because for me, just the notion of having a biopsy is kind of scary.  I've always been pretty healthy, but I'm overweight and I'm not as active as I used to be.

What has been really scary is how tired I get, even when I'm doing a little work.  I come home and I just crash after work.  I play with Javy and it's all I can do to get him to bed and crash myself.  I really don't need or like this, because Javy needs me.  I should enjoy every minute with him and all my family and friends.

So this is what's on my mind.  Why does it take a health scare to start making me think about myself?  So when the doctor calls and tells me the samples are benign, tomorrow, I'm not gonna take this for granted.  I've already started eating more soy, and fruits and vegetables.  It's time for a change.

One of the most inspirational people that I ever met is a man named Herc Levine.  Back in 1997, pre-Javy, I was lucky enough to be assigned the task of driving Herc Levine from Birmingham to a conference in Florence, Alabama because he was the guest speaker.  I was overweight back then but I was working out and running, trying to prepare to become an FBI Agent.  Herc was a physical fitness expert and the founder of the Birmingham Track Club.  At the time, I met Herc, he was 69 years old and he was planning on running a mile backwards on his upcoming 70th birthday.  The amazing thing about Herc was that he started running when he was around 40 years old.  Before that he was an overweight, stressed out mess, who had heart problems.  Then he had his first and only child and that's all it took for him to realize his life needed to change.  He started walking and didn't give up until he was running and a picture of perfect health.  It's amazing that I can still remember all these details, but I had a fun night with Herc and I'm glad his words have come back to me.  I'm gonna be like Herc, for Javy's sake.  If anyone sees or know Herc, please tell him I said, Hello.

The New Year is off to a great start!

Wow!  We've been really busy since the 2011 began.  Last week, I was off from work, but seems like we had something going on everyday.  Javy had a renal ultrasound which was ordered by the geneticist.  His kidneys and bladder looked great and there were no deformities found.  Derek Ng came over from Oahu and completely rebuilt his wheelchair and expanded it.  Javy looks small in it, but if he grows much more, we'll just have to get him a new wheelchair.  Derek says there's not anymore room for expansion.

Last Saturday, Javy went surfing for his third time.  It was really cold, but all the diehard surfers went anyways.  Javy had so much fun and he got the longest wave of the day.  I posted the link for KORE so go look at all the really great pictures taken by Bill Crane.

Javy has had really good reports from his teacher, even for the short amount of time that he has been back at school.  She says that he has been really verbal and they hear him say, Yeah, a lot.  He seems to have mastered pushing his wheelchair by himself and purposely turns himself to get what he wants.  This is such a blessing because it's hard to believe that a few months ago, he wouldn't even try.  Also, the last two nights, I've gotten him to walk to the bathroom for his shower.  All I do is hold his elbows and he just goes.  This is really amazing because he actually initiated this.

The future is looking really bright, so put on your shades.

Ding Dong, Christmas is over!

For my family Christmas means many different things..... And it doesn't necessarily have anything to do with religion, most of the time. And I do say Happy Holidays, but I've always said Happy Holidays, long before this war of words came into play about Christmas time... To me Holidays are about fun, doing things that you don't always get to do. I mean, Europeans call their vacations holidays. It's just a fun word, there's no implied meaning to it.

Getting back to the religion thing, though. Religion is personal. I'm reading a book right now about the Hawaiians. They wouldn't even speak their one true God's name becauseit was so sacred and they couldn't bear to have anyone disrespect it. That is such a different concept from the Protestant churches I grew up in. There's that whole Great Commission aspect of going out into all the world and preaching the Gospel. But I don't think the Hawaiians were altogether wrong, because sometimes the spoken word is meaningless. We can all say whatever we like, but if our actions and how we live, do not match with what we are saying, no one is goingto listen to us, anyways.

And who says that you need to speak or say anything to be a blessing to people. Javy has a very limited vocabulary and only those who are really close to him, actually no how he communicates. But do you know, I've had complete strangers come up to me and tell me what a blessing he was. I had one lady come up to me crying, because there was something in Javy's eyes that reminded her of her recently departed son. I even had a close friend tell me that Javy inspired him to be happy in every situation. Wow! That is truly a blessing....

So getting back to Christmas. I try to make our Christmases special and magical, just like our mom made them for us. This Christmas, we spent time with our friends. We watched whales and the sun sink into the ocean. We played, a lot. And we ate. I invoked the memories of both of my Grandmas. I made biscuits and gravy, just my Grandma Pentecost. And then I made the Strawberry stuff that my Grandma Williams fixed us every Christmas. My Grandma Williams didn't cook much, in fact, my Dad always complained that she starved them when they were kids. But what she did cook was the best. It was a great Christmas and judging from Javy's laughter and smiles, it was magical for him, too.

Merry Christmas, and push your own kid up the hill!

Last Wednesday night, Javy participated in his school's Christmas program with his third grade class. It's great, really, that Javy, as well as the other Special Education students participate with their general education class. I mean, in Alabama, he never really got to, unless it was something that Miss Laura did. So for this, I am very grateful. But here are some general observations that made me go, "hmmmmm." Javy's Special Education teacher was sick so she couldn't be there. So we dropped Javy off with the third grade class and one of the third grade teachers, who Javy was absolutely smitten with, explained that she was nervous about pushing Javy's wheelchair up the hill. I said, Okay, I will help anyway I can, so I can do it. Relief washed over her. Later, when I had a chance to think about this, I wondered, how hard is it to push a wheelchair up a small hill. And do they think that Javy is really that fragile. Now, I don't blame the teacher, at least she was honest. But it brought to my attention something about how people who are not around special needs kids and their perception of them.... For my family, we try to provide the most normal atmosphere possible for him. We let him roll himself down the hill (with an adult monitoring the traffic situation) in our drive way. I let him explore and climb around all the time. I'm not sure how to remedy this because the only way to know is to spend time with kids like Javy. I don't blame people for being cautious. Oh well...I guess that's all of my rant. But here's Javy's Christmas performance.

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You can also find us on Facebook at Adventures in Javyland. I'm not sure how to link these two pages together. I think it's easier to post photos on Facebook and I'm about to put up a big photo montage.

Is there a Geneticist in the house?

Javy had his annual appointment today with the geneticist. I have to say that this guy was pretty awesome. He's been seeing a geneticist since he was about 3 years old. His first one was from UAB and they are supposedly highly rated. Since we've lived in Hawaii, he's been seeing geneticists from the Hawaii Community Genetics and this time they came to Kauai. The thing I liked about this guy was that he was very open, he spoke freely. He gave us hope. He's young, though, hopefully he won't become jaded and closed mouthed, like some. I felt like I could ask this guy about anything and I did.

Anyways, they're gonna do some tests for GA1 and Fragile X syndrome. Also, he's the first doctor that ever suggested that we do some tests on his major organs, just to make sure that they function normally and see if there's anymore clues about syndromes to test for. This is one of the hardest parts about Javy being undiagnosed, not knowing what kind of hidden health problems he could have. I mean, he can't tell us when things aren't feeling right in his body. He has to be really hurting to cry.

But he also confirmed the possibility that maybe Javy was having seizures from birth and it just caused brain damage that are causing his developmental delays. (This is something that I've actually asked doctors about before) and that he does have characteristics of a child with pervasive development disorders (this is what autism falls under). This could be why he lacks certain social skills and communication. He recommended a developmental pediatrician who could help us work out a plan to help him get these skills back.

The fact is that this doctor just told his opinion and we talked to him for almost an hour and a half. I'm not sure why some doctors have to act like everything that they are thinking is top secret. I guess they are just afraid of being sued. I don't care about all that, I just want to know what is wrong with my son.

Happy Thanksgiving and God bless Mom!

I was just getting ready for bed because I have to go to work very early in the morning. Before I can go to sleep, I have to give a special shout out to my mom. I am very very grateful to have her in my life. She has been by my side since I first found out I was pregnant with Javy. She stayed by my side when they admitted me into the hospital two weeks before Javy was born and slept in that little chair, beside my bed. She held my hand when I was contracting and my heart rate kept going down. She watched Javy's introduction to the world. She been with me at all the doctor's appointments. Slept by his bed every time he was admitted to the hospital and when he had his surgery last year at Shriner's Hospital. It is so awesome to have this kind of support in my life and I am truly grateful.