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Saturday, May 19, 2012

I graduated from Pre-K today. It marks an new chapter in my life. I will be starting Kindergarten this next school year. Mommy and daddy say that I growing up way too fast. I say that I'm just taking one day at a time and living it to the fullest.

Thursday, May 17, 2012

I got new casts today at the Shriner's Hospital.

I went and got my new casts put on today. When they took them off I had several bruises and blisters on my legs and feet. Hopefully in three weeks I'll be completely done with having to wear these casts. My new ones are bright green.

Monday, May 14, 2012

National MPS Awareness Day May 15th.

Tomorrow is National MPS Awareness Day. I hope that everyone will wear some purple to honor those that are still fighting and for those that have went on and earned their angel wings. I have seen so many of my little friends that have lost their battle to MPS this year that I've lost count.

Sunday, May 13, 2012

My latest doctor appointments.

I've had a great week. I went to Nashville'TN to Vanderbilt Children's Hospital on Tuesday and Wednesday for my doctor appoints. I seen my geneticist and neurologist. My geneticist is still concerned about how rapidly my disorder is progressing. So he is going to look at some of my earlier test that were done when I first received my diagnosis, just to see if there is anything that might have been missed. I will be going back to Shriners Hospital in Lexington, KY to get the casts removed from my legs and then another set put back on. I'll be wearing them for another 3 weeks. We are hoping that this will help stretch my tendons so I can walk a little easier. 

Sunday, May 6, 2012

   Hello everyone. Sorry I've not been on here in the last couple of days. As always, I've had a lot going on. I went to my first ever go-cart dirt track races last night. Addiction Motorsports ran my logo on their carts for the race. I will post pictures soon. I had a great time. I even got to help put some of the tire up on the racks inside the race trailer. 

   Not sure if I'm going though another neurological change but I've not been wanting to eat or drink again. I did do a little better today. I decided to drink my formula instead of having to take it by my feeding tube.

   We will be going back to Nashville this week to see my doctors. We'll down there for a couple of days. If any of my friends in that area want to meet up with me while down there let me know. I'm sure we'll be hanging out at Centennial Park.

Thursday, May 3, 2012

Throwing out the opening pitch for tonight's game.

It's official!!!! I will be throwing out the opening pitch at the Tennessee Smokies Minor League (a Double-A affiliate of the Chicago Cubs) Baseball Game this Thursday night at 7pm. Come on out and see to game at Smokies Park. It's going to be a great game. Trevor Baynes race car will be there along with the Young Williams Animal Center. I can't wait.

Wednesday, May 2, 2012

Trevor Bayne Apparel from to benefit Lucas

20% of the proceeds of purchases made from this link ONLY will be paid to Lucas (foundation, or who ever)  so make sure you let everyone know to check out

Online auction to for Lucas

This is an auction being held buy "Burnin' Memories" which is a company that does custom laser engraved pictures. He has 11 pieces of quality Basswood plaques and planks up for online auction. He does amazing work. He will laser engrave your own high quality image onto the pieces. He is donating 100% of the proceeds to Lucas's fund. So here is you chance to help out and get a quality piece that will be in you family fro generations to come. The auction will be going online for the next 3 weeks.

Here are the instructions and web page link for his online auction.

"Please go here to go to our subsite: .

You will need to register to bid and PLEASE CHECK YOUR EMAIL AFTER (INCLUDING YOUR SPAM FOLDER) because an automatic verification email will be sent. If you dont validate yourself, you will not have the ability to bid. If you encounter a problem, please contact us so we can look into it."

Tuesday, May 1, 2012

Totally cool things that are in the works.

There is so much going on here lately for me. I just found out that I might be throwing out the first pitch this Thursday at the Tennessee Smoky's  game and get to be an honorary player. I also have a photo shoot coming up this Monday with the NASCAR Nationwide Series race car of Trevor Bayne. He is going to feature me on his race car for the Bristol Race. He has already sent me a signed t-shirt and has an autographed plaque for me as well. I'm hopeful that he will be able to make it in for the photos so we can have them done together.