You're digging my smile aren't you?

This is a big deal.  I've been through monitoring so many times now that it's pretty routine for me, but this next procedure is a big deal.  I will have part of skull removed and electrodes placed directly on my brain.  Then, my skull will be put back in place (temporarily) and I'll spend the next 7-10 days in the ICU while the doctors monitor my EEG.  Putting leads directly on the brain allows the doctors to see a clearer picture of what is going on without interference from the scalp, hair, or skull.  If the doctors can find the spot that is causing the seizures, they'll go in and take the electrodes off my brain and resect, or cut out, the part of the brain that is suspected to be causing my seizures.  Right now the doctors are speculating that it's about a lemon size section in the right frontal lobe that is the culprit.

My case has been presented at a conference and the many leading neurologists and neurosurgeons have come to the consensus that this is best course of treatment.  Now Mom, Dad, and me need to decide if we're ready for a 20-30 day hospital stay and are OK with the inherent risks that come with a procedure of this magnitude.

Stay tuned for more updates.  We'll go to Birmingham on 22 March for a clinic visit and discuss all of my options.

This is the first time in 3 years that my Mom and Dad are able to be with me at the hospital without any distractions.  My Grandmom was able to stay at home with my two sisters.  Don't get me wrong, I love my sisters and I like when they're able to come cheer me up, but the hospital is no fun for a 3 1/2 year old and 17 month old.

My Dad did a little video to show how the fun begins.  You'll see me getting all my electrodes glued to my head.  It doesn't hurt, but what 7 year old likes being wrapped up like a mummy?

Enjoy...

My Mom had a banner year.  She's is the rock that I've built my foundation on.  She is always there to advocate for my needs and reminds people that even though I don't speak...I still have a voice and it will be heard.  She's always there for me 24 hours per day.  If I have a seizure in the middle of the night (which happens almost every night), she's there to help me settle down and get back to sleep.  She's decided that being a Mom is the most important thing to her and she's set her own professional goals aside to ensure that me and my sisters have the loving support of a Mom who is always there.  Don't worry Mom...I know one day you'll put that Master's Degree to work and return to helping other families and children overcome their own challenges.

My Dad was awesome in 2009.  He continues to serve our Great Country in the US Army, and for that I'm thankful.  I'm also thankful that he has some of the best leadership the Army has to offer.  His leaders found it more important for him to be home with me than to be in Iraq as his unit is deployed to help the Iraqi people take control of their country.  He also set some pretty big goals for himself in 2009 and we recently accomplished one of those goals.  Thanks to my Dad...I was able to complete my first marathon (see the video)!  My Dad pushed me and my wheelchair (almost 80 lbs) all 26.2 miles.  It took him almost 5 hours but that's only because he got a terrible hamstring cramp around mile 17.  He did so good that he did the first 13.1 miles in 1 hour and 48 minutes!  Also thanks to my Dad...I now have this great website.  Xavier's Journey has been a great way to share my story and get people involved.  I've been contacted by people that are just learning how to cope with special needs like Epilepsy and Cerebral Palsy, and they've found my story helpful.  Thanks Dad...I look forward to you pushing me for more races in 2010.  Running is great, and I rarely even break a sweat!

My 3 year old sister who is more like a big sister was my biggest helper in 2009.  She's had to grow up fast because of my special needs and sometimes she's more like a little adult than a young tike.  She's always there to get me my drink, or bring me toys, or help get me unstuck when I squirm under the coffee table, or bring Mom the diaper changing supplies in the event that I have a poop'tashrophe!.  In fact, I think much of my progress is because of the example and courage I see in my little sister.  She's made some great accomplishments this year too.  She knows her ABC's, can count to 20, can write her letters and her name.  She also ran a marathon.  She did 1-2 miles a day for 25.2 miles then did last mile of the St Jude Marathon for a total of 26.2 miles.  She even got a race number, race shirt, and finishers medal!  Thanks Mary Elizabeth...you are one special girl.

My baby sister was born late in 2008, so 2009 was really her debut year.  She followed right in the footsteps of her sister and started walking at 10 months!  Since then, Mom and Dad have had their hands full.  She only has two speeds...fast and asleep!  I really like having a baby in the house.  They have the coolest toys and I love to share them with her.  Did I forget to mention that she's the cutest thing since Shirley Temple?  Maybe even more cute, but I'm biased so don't take my word for it!

No story is any good without a great supporting cast.  My Grandparents are those cast members and their support is more than I could ever ask for.  Gammy, Grandmom, and Mimi all fill the role of world's greatest Grandmothers and their love, encouragement, and support help me and my family more than they'll ever know.  Pop Pop, G-Daddy, and Pop Dale win the award for the awesomest Grandfathers a boy could want.  Their guidance and role modeling have shown my Dad what it means to be a Father.  Thanks Grandparents for just being there...you don't know how many times you've really rescued Mom and Dad!

I can't believe that 2009 is almost over.  I really had a lot happen this past year.  My seizures became quite severe and at times I was having several per day.  Luckily, my Mom found me some great doctors at Children's Hospital in Birmingham, AL.  They really went after my Epilepsy and are determined to tear down that road block for me.  I had my first brain surgery in June and since then I have seen a significant change in my seizures and they're not happening nearly as often.  I'm crawling all over the house!  I had to do something with two sisters around.  Even though those girls are great...there are times when a boy just has to get away, and now that I can crawl there's no stopping me.  I also love to stand on my own, and try to pull up whenever I can get my hands on something to help me.  All my therapist think I should be walking in no time!  2009 was a great year, but it was only a stepping stone.  2010 should hold some great achievements for me, and I can't wait to share them with all of you.  

Stay tuned to Xavier's Journey and watch me tackle this thing called life...

Being thankful for having special needs is my greatest appreciation.  My disability allows me to sit back and enjoy watching the world around me, I love watching people be goofy and silly...my dad also enjoys this past time.  I often make my sisters laugh when I sneak up on them or grab their toys.  I also like splashing them in the tubby with water!!  Recently my splashes have equaled that of Shamu, the orka whale, at Sea World Orlando, so you see, bath time is one of my favorite times of the day.

I wanted to take the opportunity this Thanksgiving day to personally say "Thank You" to all my 'fans' from the website!!  You all have helped me have one of the best years of my life.  Thank you for your prayers and well wishes, I'm sure much of this effort has allowed me to enjoy yet another Thanksgiving with my Dad!!  As we all know, he is the coolest guy in the family.  But please don't forget about his comrades from 1-15 Infantry 3rd Heavy Brigade 3rd Infantry Division who are serving and sacrificing time away from their families this Thanksgiving day in Iraq.  They are providing for the Iraqi people a new perspective on life, liberty and the pursuit of happiness.  

We must remember to give thanks to all our deployed and state side military personnel who work tirelessly and often alone in order to keep in tact our rights to life, liberty and the pursuit of happiness!  Please evaluate your gifts and crosses today and know that you can be happy if you fill yourself with thanks!

He has many more videos on YouTube.  Check them out when you feel like the odds are stacked against you.

Well, my dad completed the half marathon this morning in Atlanta, GA.  He left the house at 0450 in order to arrive in time to park and get to the starting line.

The race was the first one by race organizer 13.1 who are putting on a series of half-marathons around the county.  The race was well organized and really fun with music though out the course.  The course snaked it's way through the Oglethorpe University's campus and Brookhaven neighborhood which has some very beautiful and majestic homes.  It was a great day for a race with the weather hovering right around 60 degrees.

His time was a bit slower than he wanted.  He finished in 2:04:33, but the course was much hillier than he expected.  I would have liked to "run" the race with him but my jog stroller was not allowed on the course.  That's why you guys need to get the word out about my site.  That way people can contribute to the fund to help my parents buy me a specialized racing wheelchair!

I'll be sure to have my dad post some race photos when they're ready.

Next Sunday, Dad will run the inaugural Atlanta 13.1.  I won't be participating with him because we couldn't get a waiver to allow him to push my jog stroller in the race.  He'll use as a training run and will try to make it a 13.1 mile tempo run to see what his marathon pace will be.

Our long term goal is to one day have a racing style wheelchair that my dad can push in future races.  Since it will be a wheelchair and not a stoller, it will be much easier for me to participate in the races with my dad.  Race organizers usually don't have issues with wheelchair participants, but strollers are most times not allowed on the race course without special exceptions.  In order to make that happen though, I will need donations to help in the purchase of one these $2000+ specialized pieces of equipment.  If you would like to be a part that happening, you can click on the either donation link in the right column of my website.

Thanks and wish my dad luck in Atlanta this coming weekend!

The specific protein referred to is one encoded by plasticity related gene-1 (PRG-1) and is found only in the brain, according to the researchers. Its calming effect depends on how the protein interacts with lipids that provide a signaling function in the brain.

Hopefully, research like this and the EPGP Project, which I am participating in, will one day help people that suffer with Epilepsy live a seizure free life.

NEVER FORGET...

What were you doing that day?  Leave a comment and share your story about your memories of that day.  Help us younger Americans that were too young or not yet born learn what that day meant to you and America.

Thanks for your patience and for following My Journey...

I can't lie...it's great to have them with me.  They are all so eager to help me succeed in overcoming my disability.  My "big" little sister MaryElizabeth may as well be a Drill Sergeant.  She does her best to keep me on task and is always challenging me to crawl a little further or stand a little longer.  She also works very hard helping my even little'r sister learn to walk and talk.  Soon I'll have two of the best battle buddies a guy could ever ask for, and I pity the person that attempts to not give me my fair due.  My sisters or body guards will surely have what it takes to cover my six.

It's also nice to have my mom home too.  I have to admit that I'm a Mommy's boy...I'm only seven so give me a break or I'll call for MaryElizabeth.  My mom is there to care for me if I bump my lip while playing in my room and start to bleed all over the place which I did today...ouch.  She's also there to take me swimming and do all of the fun things that I get to do.

It's a tough job to have, but I like being the man of the house.  Even if it's only for a few hours a day.  Thanks Dad for all the work you do and allowing me to play king, but I like it much better when you're car pulls up in the driveway.

PS, don't let this entry fool you...everyone knows that Queen outranks the King in our house and my dad and I are just jesters in her court!!!

Aug 3 (Reuters) - Icagen Inc (ICGN.O) said U.S. health regulators lifted the partial clinical hold from its experimental epilepsy drug.

In March, the U.S. Food and Drug Administration decided to put Icagen's epilepsy drug, ICA-105665, on a partial clinical hold, based on certain pre-clinical data. [ID:nBNG239698]

The biopharmaceutical company said it was now planning to conduct a proof-of-concept study in patients with photosensitive epilepsy, which it expects to complete by mid 2010.

This won't be beneficial for me as I'm not sensitive to light in regard to my seizures, but if it's approved perhaps it will help some.