Sunday, August 29, 2010

Summer Time

My blog friend, Summer, is really having a tough time right now with her dermatomyositis. Please take a moment today to say a little prayer for her. She is a very uplifting, positive person who deserves a break with this flare. Please pray her medical team figures out the perfect cocktail for her to fight this disease.

Here's wishing and praying for you Summer. :)

Monday, August 23, 2010

First Day of School


Madeline had a great first day of 6th grade! I can't believe she is getting so big. I little baby girl will be in high school before I know it. Her brother, Trey, did start high school this year. And he loves it!

Wanted to post of picture of her first big day. Of course, Lulu had to get in the picture too.

Friday, August 20, 2010

Came across this post today...breaks my heart...please VOTE!


Another parent with a JDM child had this posted on their blog today. I wanted to share it as well for it's a good reminder about the seriousness of this disease - this disease that our baby girl has fought herself. Here it goes...

Cole Flack of Oregon received his diagnosis of juvenile dermatomyositis in February 2007, roughly four-and-a-half years after Thing 1 received hers.

In the years that followed, this teenager with a love of sports and being outdoors became too weak to even walk. Cole endured multiple abdominal surgeries to deal with gastrointestinal issues caused by the disease and its medicinal treatments. Yet as recently as the fall, he still managed a full course load at school and compiled a 4.0 GPA.

Earlier this month, Cole went into the hospital with pneumonia.

Yesterday, we received this e-mail written by his parents:

“Hello friends and family,
Cole went to be with the Lord at 7 p.m. tonight. It was very peaceful. Cole is free now to run ... jump ... play baseball ... everything a 15 year old boy should be able to do. …”

Cole is the third child with a form of juvenile myositis that our family has come to know since Thing 1’s diagnosis to die from this rare autoimmune disease or its complications.

Three.

When only three in a million children are diagnosed annually in the United States with this disease, that little number grows exponentially in your worried head every time your child coughs or sneezes or scraps a knee.

Please help prevent more deaths of children like Cole by continuing to vote every day this month to help Cure JM, the only national nonprofit dedicated to supporting children with juvenile myositis and their families, win a $250,000 Pepsi Refresh grant. Every penny of that grant is set to pay for research into finding the cause and cure of juvenile myositis, juvenile dermatomyositis and other forms of JM diseases.

Right now, we are No. 2 in the standings – we need to hold this position until Sept. 1 to win the grant money. The only way that can happen is with your help.

You can vote up to 3 TIMES, every day, during the month of August!
(1) Send a text vote: Text 100850 to Pepsi (73774) (standard text messaging rate apply)
(2) Use the Facebook app: http://bit.ly/CureJMonFB
(3) Vote directly from the Pepsi website site for our Cure JM and its affiliated causes at http://pep.si/CureJMKidstoWin4

Wednesday, August 18, 2010

Back to School Teacher Letter

I've attached a copy of the annual letter we give teachers at Madeline's school. I always give a copy to her teachers, school nurse, principal and PE teachers. Hope it helps you. Plagerism welcome! :)


Dear Sixth Grade Teachers:

I wanted this letter to serve as health notice regarding our daughter, Madeline Ducote. Madeline is currently battling a very rare disease called Juvenile Dermatomyositis, or as she calls it JDM. She was diagnosed on March 28, 2008 at 9 years of age.

JDM is a rare autoimmune disease which attacks children of all ages, causing them to suffer from weakened and painful muscles, skin rash that worsens with sun exposure, severe fatigue, digestive problems and a variety of other debilitating symptoms. This disease is very rare as it only affects between 3,000 to 5,000 children currently in the United States. As to date, we have only found one other person in the state of Louisiana battling this illness. Some children may experience a remission, while others will battle JDM their entire life. Madeline has recently completed a 26 month treatment. She is not classified in remission yet, but we are hopeful she will be soon. In June, her physician took her off all of her medications to test her body’s response off all drugs. So far, she has done well.

Madeline’s recent treatment involved taking Cyclosporine A (a medication normally used for transplant patients) and methotraxate (a chemotherapy drug). Combined with her medicine, it is absolutely necessary to keep her protected from the sun. JDM is peculiar in that although Madeline may look good now, having her in the sun unprotected can cause big problems. This is due to her disease, as well as the side effects of her medication.

My husband, Rick, and I request the following guidelines be followed concerning Madeline’s activities while attending class at J.I. Barron Elementary:

1. Madeline is very sensitive to the sun as a result of her dermatomyositis/medications. As a general rule, it is important that she avoid unprotected sun exposure during the times of the day when the sun is at its peak (10:00AM – 4:00 PM). We are aware that Madeline can tolerate minimum sun exposure in the late fall and winter months with proper protection. It is imperative that Madeline wears sunscreen. She will always have sunblock with her and knows how and when she needs to protect herself. She may need to put on sunscreen before recess, and any time before she goes outdoors for long periods of time. Please allow her to go to the bathroom or hallway so she may apply the sun block in privacy. It is necessary to have her sunscreen applied to her face and all exposed areas. I will supply the sunscreen for her to keep in her backpack or your location of choice.
2. Madeline may participate in gym class; in fact exercise is very important for maintaining her muscle strength. My understanding is that from time to time gym class is conducted outdoors. In general, Madeline is permitted to participate in outdoor gym class, but must apply sunscreen prior to going outdoors. I will notify you on those days when Madeline is not feeling well to perform in gym class by sending a note. I do not anticipate this occurrence to happen often if any.
3. Madeline was taking methotrexate, which is an immunosuppressant medication that puts her at increased risk of infection. It is important that I am notified if there are serious infections in the school (i.e. staph, mononucleosis, flu, etc.). Also, she will need to wash her hands and desk more often and will carry hand sanitizer with her at all times. I will also purchase hand sanitizer for your classrooms if that will help you. I can not stress enough the importance of this. What can be a simple cold for you or me can become serious for Madeline. Also, we find it takes her a lot longer to get well.
4. Madeline must visit various physicians throughout the school year which are located in Texas at Texas Children’s Hospital. She may tend to be ill more often. These events will require that she is absent, late or dismissed early. I will keep in touch with you when these events occur in order to coordinate her schoolwork.

Juvenile Dermatomyositis can be a physical illness but does not impact Madeline’s ability to think, feel and participate. You will find that Madeline is like any other child her age in all other respects. She is competitive, somewhat of an over-achiever, a dreamer and a very well-rounded little girl. I am very interested in her mental health as it relates to her disease and ask that you inform me should you detect any concerns in her emotional well being. I value your expertise and welcome your assistance should a concern arise.

One way you can learn more about Madeline’s experiences with this very rare disease is by visiting her blog at www.madelinesjdmstory.blogspot.com. She loves to tell you about her pen pals literally from around the world, in which, she has made from this site. Plus, it will help give you an idea of the path we have taken in these past two years.

Thank you so much for taking the time to attend to this matter. I look forward to the new school year, as does Madeline, and developing a new partnership with each of you.

Sincerely,

Monday, August 16, 2010

Back 2 School Splash Bash




We had nine little girls at our house yesterday celebrating the end of a great summer and the beginning of their sixth grade school year. Madeline has had a back 2 school pool party every year since third grade. Fun!

The first day of school is Wednesday. I've taken off for a few days to finalize any last minute things and to attend open houses. Also, today is my birthday...so I'm celebrating that as well!

Here are some pics of Madeline's friends having a blast yesterday. Oh to be so young!

Tuesday, August 10, 2010

Seven days left

We've been BUSY!!!

This past weekend we squeezed in a last minute weekend getaway before school started. We rented a house in Natchitoches on Cane River. For you Steel Magnolia fans...this is the location where the movie was filmed and based. Great town...happens to also be the place I met my husband. So also a very special town to us. We had a great time.

Now we have only 7 days until school starts. This summer has gone too fast. We will have a few shopping trips to make, but we are pretty much ready to go.

I need to begin to work on my back to school letter I give to each teacher regarding Madeline and her disease. I always post the letter online so if anyone wants to "borrow" my words and make it your own, have at it. The letter will be different this year since she is doing so great. But, I will still educate them on her disease and explain her absence for doctor appt., etc.

Madeline still has a lingering cough. I decided if by tomorrow she doesn't stop, we are going to see the doctor. We need to begin the school year happy and healthy.

My baby girl is going to be a 6th grader. She is really going to be a 6th grader. Where has the time gone? I don't know, but I know it's going way too fast.

Monday, August 2, 2010

Loved, loved, loved Justin Beiber




Madeline and I had a blast last night at the Justin Beiber Concert. It was so much fun and a great event for her first concert experience. She danced, screamed, clapped, jumped...well you get the idea. I did the same! I've attached some pictures. Again, thank you to our "special angel". You made her the happiest 11 year old girl!!!

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.