Tuesday, June 29, 2010

Have you wondered where we were?


I know, I've not posted in a while. But, I have good reason - VACATION!!! We just got back from Florida....and yes, there was oil. But luckily not the entire time. The first half of the vacation the water was perfect, then, mid-way, the oil blew in with the bad weather. It was terrible.


Besides attaching a yuck picture of the oil, I'm also including a pic of Madeline. I know, she is beautiful!So was the beach and water, at first. :)

Wednesday, June 16, 2010

A star, or two, are born...

Everyone's a star and deserves the right to twinkle. - Marilyn Monroe

Madeline is still doing great. As we laid in bed last night watching The Incredibles, I asked her how she was feeling since stopping her meds. She stated, "Wonderful! I feel better than ever. That medicine made me feel sick. Now I don't feel sick anymore." That was music to my ears.

Madeline loves Marilyn Monroe - I guess because she is pretty, wears shiny things and a lot of make-up. I came across this quote the other day and couldn't help but think about Madeline. And how appropriate to share on the blog since Madeline and her brother are recently starring in a news spot for our local television station. Check it out. You'll see Madeline for she is the swimming girl and the trampoline jumper. Her brother Trey is cleaning the pool (which by the way he never really does) and in the fishing scene.

My two little stars...just a twinkling.
video

Friday, June 11, 2010

Beautiful Bloom


Madeline had to take a picture yesterday of her first sunflower she grew in her flower garden. She is so proud.

We are on week two with no meds and she is doing great. I don't know what to expect, but I can't stop worrying about the what ifs.

Monday, June 7, 2010

Madeline update

It's now day four with Madeline taking her medications for strep throat and tonsillitis. The drugs are working well. Literally, on day two her throat stopped hurting. She's back to normal, but still has to complete six more days on antibiotics.

We are still watching the oil situation in the gulf. We still plan to go to Florida even though tar balls have been spotted on the beaches. Around here, that's were everyone goes on vacation. But, so far, no one has told me anything too scary regarding the beach, smell or dead sea life on the Florida shores. Now here at home(Lousiana) that's a different story...and a sad one too.

Well, Sunday passed and went and no medications had to be taken for her JDM. Weird! But oh so nice!!!

Thursday, June 3, 2010

791 days...but who's counting???

First, the good news. Madeline's doctor appointment in Texas with Dr. W was great. All of her tests were perfect. She's strong as an ox. Her bloodwork was once again perfect. Dr. W was so pleased with Madeline's condition, he officially has taken her off all of her medications. Can you give me a woo hoo!!!!

We were so excited when he told her this fabulous news. It actually for once feels real. I see she is perfect, the tests tell us she is and the doctor has blessed it. Thank you God! We all hugged and teared up a little. After 791 days of taking medication to fight her JDM...we are done! Really, really done.

Now, the bad news. Madeline always wants to go to Olive Garden after her appointments. It's a tradition we do each time now. After being seated at our table and deciding what we would eat, Madeline stated she didn't feel well. She thought she was going to vomit. I wasn't real alarmed because this happens sometimes after taking her methotraxate. I thought once she ate she would feel better. After the food came, Madeline excused herself. After a few minutes, I went to check on her and the poor thing had vomited everywhere in the bathroom. The sweet employees were helping her. We left soon after and she slept our long drive home.

Later that evening, Madeline said she was freezing...um, the fever alert went off in my head. We took her temp and it was 102.9. Wow! And it only got higher as the night went on. But, she had no symptoms except for her vomiting (once). I felt it must be viral and the next 24 hours would be telling. Wednesday, her fever was still there and later in the day...her throat began to hurt. Aw, now we know the problem. We called the doctor, but could not get in until today.

Long story short, we saw our ENT this morning. The verdict...tonsillitis and strep throat. Really!?!? Wow...cher bebe. She is a sick little girl. So what happens now? We get off her JDM meds to only have three new medications to take. "That's rather ironic," said Madeline. Yes it is.

But, we are on the path to remission. We have a lot to celebrate and be thankful for. We do not have to go back to see Dr. W for six months...that's December 7. Of course, if anything changes we must call him immediatly. But my gut says it's going to be alright.

189 days until we see Dr. W again. That's 189 days until we can say Madeline is in complelty, absolutely, 100% in remission.

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.