My parents could really use some help on this mystery.  Do you have experience with other children with special needs that do this?  Please leave a comment or suggestion...

My dad and I will be St. Jude Heroes this year when we run the St. Jude Memphis Marathon this December.  What does that mean?  That means I need your help to raise money for St. Jude Children's Hospital.  All the money donated goes to research to cure childhood diseases.

I'm almost at 20% of my goal.  You can help me reach my goal and be a St. Jude Hero.

CLICK HERE TO DONATE.

...what do you do to stay cool?  I can't stay inside all the time, and I have to be careful about going out in the heat as it can cause me to have seizures.  The only other option is to spend the afternoon at the Windsor Park pool.  It's our little neighborhood pool and it's not usually very crowded since it's "Members Only".  I'm so exclusive!!!

Mom and Dad took the Flip Camera with the underwater case and got some good footage of me and my sisters swimming.

Enjoy your summer, stay cool, and thank for watching the video!

Well Summer in west Georgia has it's challenges especially for someone with Epilepsy.  It's hot, usually over 100 with the heat index, and it's so hard to do much outside unless it's at the pool.  Despite the challenges, Mom and Dad have worked hard to ensure that I enjoy as much as I can before my surgery next month.

Speaking of surgery, it's been pushed back to 13 August so that both my doctors are available and not troubled by other responsibilities like being on-call.  It really put a kink in our plans.  My Gammy had arranged 2 weeks off from work with doctors from other regions covering her shifts in the ER so that she could come to B'Ham and help Mom and Dad.  Now my surgery is two weeks later than planned and Gammy can't rework her schedule in such a short time.  At least Grandmom and Pop Pop will still be able to watch my two sisters while Mom and Dad take me to Birmingham.  The other speed bump is that puts my Mom two weeks closer to her due date of September 21st.  The Army doctors have cleared her to travel and are going to have her carDad on the second pitch of The Daddy 5.6ry all her prenatal medical records with her just in case the new baby wants to be born in Alabama!  Let's hope not...

The end of June and early July meant Camp Grandmom.  It's an annual event where me and my sisters and as many cousins that can make it all go to Grandmom's house in the mountains of western North Carolina for a week.  We go on day outings, visit parks, hike, swim, etc and give Mom and Dad a well deserved rest.  While I was playing, Mom and Dad were visiting friends in Linville Gorge, NC.  Dad was climbing the Amphitheater area of the the Gorge with his friend Mr. Nate from the Army and Mom was doing girl things with Mr. Nate's wife, Mrs. Kim.  Mrs. Kim and Mom are great friends and my sisters love their two girls.

We also got to see some fireworks in NC, and there was a bonus display at Callaway Gardens in Pine Mountain, GA the Friday after July 4th due to weather so we got to see a another professional display.

We have to make the most of the beginning of this summer because after 12 August, I'll be out of commission for some time.  I hope you are all enjoying your summers, too!

It's going to be a family event again.  This year my Pop Pop Ruddy is going to run it with us.  It will be his 4 millionth marathon so Dad better train hard or Pop Pop will run him into the dirt.  Mary Elizabeth is going to run the family fun marathon.  She'll track her mileage at home for 25.2 miles then run the last mile at the race and complete her second extended marathon.  My Mom is going to try to run the St. Jude 1/2 Marathon just 2 1/2 months after my new sibling arrives (we don't know if it's a boy or girl).  Of course, Gammy, Pop Dale and Grandmom will be there as crowd support and on baby patrol.  We're going to try and convince G-Daddy and Mimi to come this year too.

Anyway, check back as I post about our train up and keep an eye out for us on the Riverwalk or at Fort Benning.

On to better news, I'm 8 years old as of June 15th.  I'm almost a pre-teen!  I'll be celebrating my birthday this weekend which is a little late but it's OK.  We're having the party at my favorite place, our pool!  Friends and family are coming from all over to throw me a big party before I go back to Children's Hospital on August 3rd.

I'll post pic's and make sure Dad puts together a video for everyone that couldn't make it.

Stay in touch!



So tomorrow, make sure you wear something purple.  When people ask you about your purple, tell them to come visit PurpleDay.org or direct them to my site for an inside look at the life of someone with Epilepsy.

You'll notice that my dad redesigned my site to show my Purple Pride!

My family and I just returned from Children's Hospital in Birmingham, AL.  We had to go meet with the brilliant and determined Dr. Kim to discuss my options to control my Epilepsy.  She spent almost two hours with my parents and me and reviewed several EEG's and showed us her interpretation and reasoning for moving on to the next step.  That next step is the subdural grid evaluation and resection.  As I described in my last post, this process will be very involved and possesses all of the inherent risks that brain surgery presents.

Since my Corpus Callosotomy, my seizures have not decreased.  They've only changed.  The benefit is that now the team has a clearer picture of the epileptogenic area.  Dr. Kim can now see the that there is in fact a seizure foci, and it's originating in the right frontal cortex.  That, in conjunction with a slight abnormality seen in the MRI and hot spots that show up in the same region on the Ictal SPECT, lead the team to conclude that they can reduce 70-80% of my awake time seizures.  I still have sleep time seizures too, but those originate in the left hemisphere near midline and are too close to my motor cortex for surgery.

This has not been a short trip to find a "cure".  This Journey has taken almost 8 years and has included nearly 15 hospitalizations to monitor my Epilepsy.  I've been on 8 anti-Epileptic drugs and have had many different combinations administered.  Once a patient has had 2 drug failures, then statistical likelihood of drug controlled Epilepsy is nearly 0%.  I've been to some of the most advanced research hospitals on the east coast.  I've seen physicians at Wake Forest/Baptist Medical Center, Medical College of Georgia Children's Medical Center, Duke University Children's Medical Center, Emory University Children's Center and finally Children's Hospital/University of Alabama.  I've had my case presented and reviewed at Baylor University, the National Institue of Health and John's Hopkins Hospital.  Not to mention all the general practitioners, nurses, geneticists, etc that have guided my parents and me on this Journey.

This summer will be it as far as what is currently available to control my Epilepsy.  This, in essence, is the final stop of my Journey to cure my seizures.  If all goes well, I'll be nearly 80% seizure free and my quality of life will improve and continue to improve as I grow and recover from this procedure.  Now my parents have to decide...is this the right path for me and does the benefit outway the risk.  Nothing in medicine is ever certain, but you have to trust the professionals and know that they're doing their best to improve life.  My parents and I believe in Dr. Kim and Dr. Blount and the whole Epilepsy team at Children's Hospital.  They've presented my case at their conference and have come to a consensus that this procedure is the next, and probably final, step in our Journey to end my seizures.  Will I awaken from anesthesia and be a normal boy?  No probably not, but at least my brain won't keep rebooting itself 40-50 times per week while I'm trying to learn to walk, talk, and do things that normal kids do.

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.