GEAUX TIGERS!!!!

I hope everyone had a blessed Christmas season. I sure did!  My family & I want to say thank-you to everyone who  prayed for us and who donated to my foundation this past year.  You have no idea how much it means to us and how much your prayers are helping!

Can you believe it!! I’m finally starting to grow and now I need new clothes and new braces and even a new wheelchair! I can’t wait til it comes in! It is going to be purple and gold, just like LSU!! And one of the new braces I’m getting will be black & gold cause I can’t forget about my Saints!!

Besides the weight I gained, I also gained confidence in myself and what I can do!  I can now get out of my bed and come down the stairs all by myself!!  I mean, I do it a little differently than you do – but I still do it!!  It  feels great to do things on my own. I can even drive my “Lightmo” McQueen car that Santa brought me! I love it! I keep telling Mom I can drive to the store for her but for some reason she won’t let me. I dunno why not?!

You should see all the awesome stuff I got for Christmas!! One of my other favorite gifts is my LSU marching band uniform! One of my goals for 2012 is to get to march with the LSU band down Victory Hill before a game. I can’t decide if I will play my trumpet or the drums when I do that. Let me know what you think…

Well, I’m looking forward to a great year and I’m so excited for the new things I will  learn to do!!

MY BUDDY, MIKE THE TIGER!

Yep!  That’s me with Mike the Tiger!! –  I went to LSU’s first home game. I was so excited to see the marching band and the fleur-de-lis ladies (that’s my name for the golden girls). I think I’m gonna play the drums in the LSU band one day!…. And in case you are wondering, I’m still in school and doing just great!!

GOIN TO SCHOOL

MY FIRST DAY OF SCHOOL

I turned 4 this month. Can you believe it?!  And, I started school last week. I am in pre-K and I am going to a new school.  The first week was a big adjustment for me. It was even bigger for my mom!  But by the end of the week I was starting to adjust to things.  (I think my mom still needs a little help!)  I go to school from 8:30 to 3:30.  I had trouble with nap time but now I sleep just like everyone else.  My mom still has to come to school during the day to “cath” me but she is teaching the 2 ladies who are paras for my class to do it.  In case you don’t know what a para is, I’ll tell you.  A para is someone who helps the teacher with children who have special needs like me.  They make sure that I eat and take me in and out of my wheelchair and just watch out for me.  I kinda like the extra attention and I sure appreciate the help!.. Well keep in touch – I’ll make sure to let you know how my school year goes.

CELEBRATING MY 4TH BIRTHDAY!!

MY 1ST TRIP TO DISNEYLAND in CALIFORNIA

My Mommy and Daddy took me to the Spina Bifida conference in California this June. While we were there, I got to go to Disneyland to visit Mickey Mouse. But can you believe it – we had to cut our trip short cause my new shunt – the one I got in March – started to malfunction. Good thing Mom and Daddy brought me home when they did; cause the next morning I had to go to the emergency room.  And a few hours later, I was in surgery to replace a part of my shunt. God sure was looking out for me on this trip.  He gave my mommy and daddy wisdom to take me home when they did and He let me have a pain free flight home.  I am so blessed! My only complaint is that now I have that weird haircut again!  I sure hope my hair can grow back before my “Bunka” Beau’s wedding at the end of July!

DADDY'S HOME!!!

I have the best dad in the whole world! I mean – I have a great mom – I call her my princess and she takes really good care of me. But my dad – well – he’s my best buddy. We get to do all kinds of “guy” things – like ride in his truck and go to football games and swim in the big pool… Wanna know what I think is really special about him? It’s that he figures out a way to help me get to do the kind of things that most other kids my age are doing. We don’t let a little thing like spina bifida get in the way! – Just check out the slide show and you’ll see what I mean - Click to view slideshow. 

LOOK AT ME!!!

I’m sooo excited!!!  I just learned how to swim!  My mommy says that it’s great therapy for me.  I like it cause I feel “free” when I’m in the water.  Just you wait and see – I’ll be swimming like a fish by the end of summer!   Check out the video of my first attempt at swimming..

SAM & ME

We celebrated Sam’s First Birthday this month.  I am so grateful that I have my lil brother!

It took me a while to get use to the little guy but now I can’t imagine life without him. My mom says he’s given me a reality check – that everything isn’t always about me. I haven’t completely accepted that concept yet – but I’m workin on it!

I love you, Sam!  And thank-you Jesus for giving him back to our family! – Guess I’m not the only miracle baby!

3 weeks after getting a new shunt and I'm doing great!!!

I can’t believe I just finished my first year of school! It was awesome! I just had my last “horse therapy” until the fall when it cools off. At my last session, Austin, a student worker who has been helping Ms. Carol with me for the last 3 years, gave me a real cowboy hat.  Now I can look just like Woody when I ride Mr. Charley.  And since Austin will be going off to college – kinda like Andy in the Toy Story movie – I will have the hat to remind me of him and how kind people are to me.  I am so blessed!!!

AUSTIN & ME & MR. CHARLIE

MY PRESCHOOL CLASS at LSU on our last field trip

Our Mother's Day lunch. Isn't she beautiful!! Everyone thinks we look alike!

I have the best mom in the whole world!! You have no idea all the things she does for me. – Here’s an example of a typical day at our house –  She has to make sure I wake up in the morning in time to be ready for school or an early therapy session. Getting up for most kids involves the usual stuff. But for me – I’m a cut above the rest – so I need a little extra attention. Like, I need Mommy to catheterize my bladder first thing when I wake up. That’s my version of going to the potty. And she has to remember to “cath” me every 3 hours all day long.  It’s not so bad when we’re at home, but when we are out running errands that process can get a little tricky.  Mommy also has to give me all my medicine.  Then she has to take off my AFO’s (that’s short for ankle-foot orthotics) and make sure they didn’t cause sores on my feet during the night. Then we do the kinda stuff other kids usually do in the morning like eat breakfast, brush your teeth, … you know.  Next it’s stretching my legs and putting back on my AFO’s. Now we’re ready for the day! Since I have about 5-6 different therapists, I usually have a least one therapy appointment every day; and some days it’s two. I have about 8 different doctors taking care of me,  so you can usually count on a doctor’s appointment somewhere in the week, as well.  Then there’s school and playtime and the usual stuff moms do. Oh, and don’t forget about baby Sam. He really needs her now that he is crawling. He gets into everything! At night she helps me out when I sit on my “big-boy” potty.” It’s a special chair for kid’s like me to use when we “go to the bathroom”. That whole process takes about 30 minutes. Then it’s medicine time again and off to bed. Oh and during the day she has to make sure I don’t run a fever, and I drink lots of water and I walk with my braces. I’m sure I left out some stuff; but I think you get the picture. Now can you see why she’ s the best mom in the whole world?!  But the real reason I think she’s the best mom in the whole world is cause she makes me feel like I’m the best kid in the whole world!  I sure do love her!

SAM & I AT THE EASTER PARTY AT HPC. I LOVE MY CHURCH!!

Boy, has a lot been going on since the last time we talked! My baby brother Sam and I have been keeping our mom & dad so busy that they didn’t have time to turn on the “cupooter” for me to write to you…..sorry!

AUGUST – So let’s see – where were we?  Oh yeah, I was just about to start school. Well, at the end of the month I started school at LSU!! In case you’re wondering – I’m not going to college – it’s the developmental preschool on LSU’s campus!! But I’m at LSU just the same!!  I looove my school and my teachers and especially my new friends!!  School is so awesome cause I get to do things that I haven’t done before – like go on field trips around campus. I also got to learn how to sit quietly and let someone else do the talking. That took a little while to learn, but I’m really good at it now!  What I like best about my school is how my teachers and the children there treat me like I’m just “one of the gang”.  And hey, sometimes I do things in a different way than the other kids but we all wind up with the same result.

SEPTEMBER – I started seeing a new urologist and he changed the medicine I was taking to help my kidneys and bladder. I was glad cause the old medicine was makin me feel real bad. The new medicine is working much better for me and now I’m back to my old self!

OCTOBER – My school got a special bike for me to use. My therapist helped me to learn how to pedal it with my hands and now I get to ride my bike at recess with the other kids! It’s so much fun and it wasn’t too hard for me to learn.

I got to meet "Mike the Tiger" before the LSU game. It was awesome!!

NOVEMBER started out great – I got to go to my first LSU football game.  I loved watching the football players but I think I liked the “marching band” even more!! I talk about them everyday since then.   Like  I said, November started out great but something really bad happened to my baby brother Sam. (You can find out more about it on BABY SAM)  God gave us a really big miracle when He gave baby Sam back to us.  My family is so grateful for that!

DECEMBER finally arrived and I got to take Sam to Disneyworld and introduce him to Mickey & the gang! We flew on a big airplane and then spent a whole week with Mickey Mouse!! It was all so magical! I love how I’m treated when I go there!

MICKEY WAS TELLING ME HOW HAPPY HE WAS TO SEE ME

When I got home I had surgery on my eyes to help them to straighten out.  Now I should be able to use both eyes at the same time and I probably won’t need to wear glasses anymore!  Even though I’m a happy kinda guy – I was sad for baby Sam. He needed lots of attention from my mom and dad and lots of prayers, too. But God is so good and by the end of March, Baby Sam was almost fully healed!!

My school's version of a Mardi Gras parade. I let Sam ride with me.

JANUARY &

FEBRUARY – Cause my mom & dad were so busy taking care of Sam, my grandparents and some of my aunts and uncles helped out by spending time with me. I really liked getting that extra attention from them. And they tried not to spoil me too much!

MARCH – Like I said before – God is good and His timing is perfect – cause by the middle of the month, just when Sam started doing better, I decided it was time for me to get back some of the attention I had given up. So I got my mom to take me to the E.R. – no ambulance ride or anything like that – just a nice slow ride in her car. I was having a really bad headache and since she says I never complain like that, she needed me to get checked out.  By the time the doctors finished their tests, I was feeling fine, so the hospital asked me to be in a commercial they were shooting that day.  See how God can take bad things and make them good!
Anyway- I spent the next 3 days kinda feeling the same way. By the 5^th day my mom knew the doctors were wrong when they told her my condition was seizure related.  She’s so smart!!  So she and my dad took me back to the E.R. and this time the doctors got it right.  I was having shunt failure. You can go to MY MEDICAL UPDATES  to find out more about it. I had to have another shunt put in and spend a few days in the hospital – but I got some undivided attention and some new toys out of it, so all –in-all it wasn’t so bad!! …that is except for the haircut they gave me! Once I started feeling better my dad took me to see Mr. Rene – he owns the Forum Hair Salon and he fixed my hair. He did a really great job and you could hardly tell where they shaved my head!

Giving a "thumbs up" two days after getting a new shunt.

Well I guess we’re all caught up!  Can you believe  it’s already APRIL!  I just got back from a long week-end at the beach with my family.  Sam & I are continuing to heal more and more each day. I really appreciate the prayers and if you could remember to pray for Baby Sam I would appreciate that even more!

Sam didn't like the sand at first. But once I showed him how to play in it, he was OK.