Saturday, November 27, 2010

All better

Madeline is much better. She should be good to go back to school on Monday. Hard to believe our Thanksgiving break has come and gone so quickly. With Madeline being sick and my dad in the hospital, it hasn't been the best holiday. But, we did put up the Christmas decorations and it has lifted our spirits. Plus, it was Rick's birthday (the big 39) and we had fun celebrating with him.

We got some cool news yesterday. Our local paper plans to run Madeline's story as the cover story on Monday. Hope she doesn't begin to get the big head. Ha! Nah!

Monday, November 22, 2010

What in the world???



Madeline's dad and I went to the LSU game this weekend. Madeline decided to stay at home with her grandparents to visit with her cousin who was spending the night too. When we got home, Madeline had spots all over her. She had two or three on her face Thursday, but I didn't think anything of them. Well, now, they are everywhere. She was vaccinated for chicken pox as a baby, but they sure do look a lot like them. We are going to the doctor this afternoon. Will update after. Here is what they look like.

Saturday, November 20, 2010

Madeline's Article in The Advocate

http://www.2theadvocate.com/features/109114629.html


Check out Madeline's article which was in The Advocate yesterday. The actual newspaper had six pictures of her, but there is one picture on the online version. Thanks to the writer Robin Miller for doing a great job. Enjoy!

Tuesday, November 16, 2010

Madeline's paper

Madeline had a small project where she had to answer a question in her journal for English. I'm always surprised when she writes about her disease. I thought I'd share her journal entry. The question she had to answer was - What is the best birthday gift you could ever receive?

The best birthday gift I could ever receive is for my disease to go away. It would be the best birthday present because I've had my disease for over three years and I need a break from it. That would be the best birthday present in the world and no one could argue any differently. I can't wait until my birthday. I bet I will be in remission.

Love, love, love that girl!

Super Star

Madeline is still on a high from her LSU Golden Girl experience. In fact, she's getting a little media attention on the whole experience. A Baton Rouge television station did a story, as well as The Advocate, Baton Rouge newspaper. Once they come out, I'll post on the blog. Then, locally, our NBC affiliate and local newspaper are doing stories. Cool!

I'm glad the Golden Girls will get the recognition they deserve for doing such a great thing for Madeline. But, I also love the fact that this disease will get some much needed exposure too. Who knows, maybe someone will see the article and realize the symptoms are the same their child is experiencing. You never know!

Wednesday, November 10, 2010

Madeline's Best Day of Her Life

Madeline had her LSU Golden Girl day experience last weekend. It was an incredible day and we met some fantastic, kind people. Besides the wonderful Golden Girls making her day special, LSU beat Alabama!!! Here are the pictures. I think they tell the story of the day better than anything.

Click here to view these pictures larger

Friday, November 5, 2010

Tomorrow's the big day & Cure JM video

Madeline is on cloud nine and can't wait for her Golden Day tomorrow with the LSU Golden Girls. We packed last night and she picked out her outfit. The funny thing is she decided to wear yoga pants just in case they asked her to dance. Too cute! Promise we'll take loads of pictures and post them. I'm so happy for her. She is blessed and so are we.

Also, I was sent the latest Cure JM newsletter today and on it there was a great video for those just diagnosed. I recommend you watch it. I commend them for producing the video. I know I would of found it useful and comforting for us. Here it is....

Wednesday, November 3, 2010

Madeline was all the buzz for Halloween



Here's a picture of my sweet little bumble bee. I've also included a picture of she and her brother...he was Jigsaw from the movie saw. Ugh, I hate those movies. Enjoy!

Oh...and she is feeling better. Maybe just regular old aches and pains. Gosh, I hate my head goes straight to the worse scenerio. Thanks for the extra prayers.

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.