Wednesday, September 15, 2010

Wow...

My life has been somewhat of a whirlwind lately. We are busy at work in our strategic/budget planning process and my hours at work have been long lately. Therefore, the blog has been ignored lately.

Update on Madeline - her health is great...JDM all clear so far!!! Her spirits...she's on cloud 9 and here is why....

Earlier this year we recieved an email from someone who found her blog. This someone is an LSU Golden Girl Caroline Sexton. She mentioned she saw her blog and noticed that Madeline said she one day wanted to be an LSU Golden Girl. She also mentioned the Golden Girls would love to do something special for her. We were so excited, but didn't know if anything would come of it...well....it is...see the email we received last night.

Hi, Mrs. Charla,

I am so happy to let you know that my director Roy King and the Golden Girls would be glad and honored to have Madeline along with you and your husband be a part of the LSU Tiger Band for any Saturday football game! The director says that earlier is better and so here are some dates to choose from;

9/18 Mississippi State- kickoff is at 6
9/25 West Virginia- kickoff is at 7
10/2 Tennessee- kickoff is at 7
10/16 McNeese- kickoff is at 7

If Madeline is well after October 16th weekend we may be able to look into those games but these are the earliest that are coming up. As I am sure you know, there is always a possibility that kick off times could change. The day with Tiger Band and the Golden Girls would include; watching the practice in the Indoor Football Facility which is a two hour rehearsal but you can come whenever you wish if at all, following practice we will eat lunch as a team while we get ready and that is something you or Madeline could be a part of if you wanted (your husband would not be allowed to attend this of course!) or you three could get lunch somewhere on campus or at a tailgate if you have friends near by, then the entire band will meet at the top of the Greek Theatre for 'Step Off' at a certain time that YOU WILL BE INFORMED OF!.......... this is where you and your family will walk down the hill leading Tiger Band into the PMAC where you will sit in designated seats to watch the performance in there. Immediately after you all will lead the Band out again into the stadium where you will sit a few rows above the Golden Girls and Color Guard and in front of the Band.

Lanyards will be given to the three of you to wear throughout the day so that officers and other officials know that you have permission to be where you are. Anytime that you are walking (down the hill and into the stadium) or sitting (in PMAC and at the game) you will be accompanied by the staff of Tiger Band and others chosen to attend for that day.

I hope that all of this makes sense and I would be glad to talk to you about all of it in more detail if necessary. All that you need to do is pick a game and show up!

I cannot wait to meet you all and I hope this sounds like a good time to all of you!

GEAUX TIGERS


WOW!!! Yes, I cried and Madeline's face shined! What a wondeful gesture for our sweet little girl who has gone through a lot. And what a special person Miss Caroline Sexton must be. The title of Golden Girl is appropriate for someone so special, giving and kind. We can't wait to meet her and all the other Golden Girls. Geaux Tiger and Geaux Golden Girls!!!

Wednesday, September 1, 2010

We did it!!!

Wow!!!!

Cure JM came in FIRST place in the Pepsi Refresh Grant promotion. This is INCREDIBLE. Talk about some persistent moms, dads, grandparents, friends, etc. It's hard to believe this big disease which effects a small amount of children won. This is AWESOME!!! Thank you, thank you, thank you to so many of you who told me you voted everyday. We appreciate it very much.

Congrats Cure JM. You deserved the $250K reward. Do good research with it and find a cure for juvenile dermatomyositis.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.