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.

KORE

By the way, Javy went surfing for the first time in October. It was one of the most awesome and amazing experiences. A group of saints known as Kauai Ocean Recreation Experience (KORE) meet every four to six weeks and help people who otherwise couldn't experience the ocean in an awe inspiring way. Check out their website at http://korekauai.com/, Javy made the front page. All of the volunteers create this wonderful environment where you don't have to worry about anything. They do anything to get everyone into the water and there's no worries. Thank you, KORE!

Denial

So on Monday, I took Javy to the Department of Health, Developmental Disabilities Division for an intake interview. I happened to find out that the State of Hawaii has a Developmental Disabilities Division when I was googling anything I could think of to help me diagnose Javy (That's what having a child with an undiagnosed disorder comes down to sometimes, googling.) And Google is so smart nowadays that it knows that I live in Hawaii. Basically, their services provide home and community based services, including hiring someone to come into your home and do chores for Javy. For more information check out their website http://hawaii.gov/health/disability-services/developmental/index.html.

Anytime we meet someone new like this and we have to rehash the past and it dredges up all those old memories. For the interview, I brought all of Javy's medical records, schools records, and anything else I thought would help prove that we needed their services. I even found the original paperwork from Javy's first evaluation after his nine month check-up when the doctor first told me that Javy had developmental delays. Thank God, I can finally read those words without breaking down and crying.

For Javy's nine month check-up, I took him to his pediatrician, Dr. Battles at the UAB Clinic in Huntsville. I remember sitting in that tiny little white room with Javy sitting on my lap and mom sitting on the other side of the bed. An intern came in and asked us a bunch of questions and then she started to play with Javy. She put a pen in front of him and he didn't try to grab it or follow it with his eyes. He never looked to see what the noise was when she rang a bell. Nor did he follow the pen when she dropped it. Still clueless, I was getting very annoyed because she was making such a big deal about it. I thought, all babies are different and develop on their own good time. Then the doctor comes in, she plays with Javy, too. Follow the pen, Javy. I start to make excuses for him. He just doesn't want the pen. He grabbed my pen, yesterday. Ms. Williams, Javy appears to have some developmental delays. I'm recommending him for further evaluation so he can receive early intervention services. What does that mean?

The doctor says in a very technical way, Javy did not meet the standards of a typical 9 month old. Why is he not developing normally? Will he ever walk? Is he going to be alright? Javy will have to have more tests to figure that out. Here, (hands me an appointment card) take Javy to his evaluation and he can get therapy. I left that doctor's office so pissed off and very confused. But being the perpetual optimist that I am, I just decided that she was wrong. Javy would catch up and being playing soccer with all the other preschoolers.

Fall Break Part Dos

Here is the conclusion to our Fall Break 2010. I know, I know, it's been over a week since it ended. Well...what can I say, I wanted to put together the perfect video. Fall Break ended without any more scars or bruises. We went to the Queen Emma Festival, up at Koke'e on Saturday. We had the honor of watching the most beautiful Queen Emma sing and dance. If you don't get chicken skin listening to her voice then check your pulse. The Queen Emma Festival (EO E EMALANI I ALAKAI FESTIVAL) commemorates Queen Emma's 1871 trek up to Koke'e from her Lawai home on horseback. I imagine that was an awesome journey and there's no way to imagine the beauty, they must have seen. As beautiful as Kauai is now, it must have been even more amazing before tourism and modern society left it's mark. But I digress. It was a beautiful day and Javy had a great time, rolling down the hill and eating anything he could get his grubby hands on. The rest of the weekend included Salt Pond and 4 wheeling driving on the sand. A great week all together.

Fall Break Part 1

This week is Fall Break for Javy! What's remarkable about this Fall Break is that Javy is exhausting. Like I've said before, Javy has been off his seizure meds since August. His activity level is like a toddler. Remember those days when your child was crawling everywhere and there were gates everywhere and everything had to be hid and out of the reach of little hands. Yep, that's were we're at. The only difference is that Javy is about 63 pounds and over four feet tall and he has wheels. What this also means is a lot more bumps and bruises.... Another words we have a Brendan Williams Jr. on our hands.

Here's a list of this week's events so far:

Sunday was a wash for me because I had to work until 4:30pm, but when I came home there was a huge scratch on his cheek coming from his mouth. Mom is not sure how it got there but we think it was somewhere between the time he got stuck under the table for the fifth time and when he got his head wedged between the shelf on the TV stand and nearly choked (don't worry, mom was right there and got him out of the predicament). Lesson learned, he can no longer be left alone in a room.

Monday we got to go to Salt Pond. It was a great day and Javy swam for a about an hour.

Tuesday my back was so sore from going to Salt Pond, we had to take a day of rest. I have to carry Javy down to the water and it takes a toll on my back and hips for that matter. I'm going to have to come up with something soon. The boy keeps growing. Maybe a jogger stroller is the answer for now, I'm going to research it more. Swimming is the best thing for Javy. My sister bought him a nice swimming pool but since we moved to the new house, we have to put up a fence. Lesson learned: I need to get in better shape.

So we played in the house and that really showed me how active this boy is. It's actually pretty awesome. He was all over the place, and pretty much everywhere he wasn't supposed to be. Climbing up on furniture and trying to stand. Grabbing everything on the tables.

Then later that night, I think he got overheated because he had a crying jag and he hasn't done that in a really long time. I had put him in bed and we heard laughing and then somehow it turned to crying. I took him out of bed and after several attempts to calm him down, he just never calmed down. He finally fell asleep on my bed with the fan blowing directly on him, laying on his belly.

Finally, this morning, we were playing on the floor in the den and Eli the cat decided to get in on the action. Javy pulled himself on his knees and took off for Eli. Eli just laid there and I thought it would be okay because he wasn't scared and Javy can be really loud when he's excited. So Javy gets to Eli and he just lays his head on Eli and Eli takes it for a little while. Then I see the paw come out and smack Javy on the head, above the eye. Javy was kind of shocked but he never cried. Eli got him pretty good and a little blood came out.

The week is only half way over.......

The first half of the video is part of Javy's crying jag last night. The second half is Javy this morning with all his combat wounds.

I'm going to return to Memory Lane in my next blog. For this blog, I really want to talk about the present. Javy has been off of seizure meds since August and he has been more aware of everything. Yesterday, he had a really, really good day!

We decided to drive to the other side of the island to see if it was still there. (Yeah, it is.) Javy was so attentive during the drive over there, and it's a pretty long drive, maybe two hours or so. He was totally engaged in everything that we did.

Also, a lady approached us and introduced herself to us. She has a son about a year older than Javy, who is wheelchair bound. She is an amazing person, she fought to have her son stay at his local school, which is next door to their house. They tried to tell her that he needed to go to another school that was better equipped to deal with special education. She managed to fight them and save face. After all, as she put it, it wouldn't do her son any good to alienate everyone. I think this is someone that we need in our life, because she has a true talent.

Here's a video that my mom managed to capture of Javy. In it, he is trying to open the door of the car (don't worry, child-safety locks are enabled.) And then he is dancing to the music being played on the radio. He wouldn't have done this a couple of months ago.

Before we knew....

Before we knew....

there was relief, rejoicing, and sleeping.

There were ordinary, day-

to-day extraordinary occurences:

And there were plenty of dreams: Dream of becoming a rockstar, playing with the big boys and sumo.