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Madeleine's Journal

Welcome to Madeleine's Web Page. It has been provided to keep family and frends updated on her medical condition.

In Feb. 2004 she was diagnosed with juvenile dermatomyositis. It is a very rare auto-immune disease. Some of the symptoms include: progressive muscle weakness, active inflammation of the muscles, muscle pain , muscle atrophy, muscle contractures, fever, rash, fatigue, malaise, irritability, weight loss, difficulty swallowing due to weak muscles, joint pain and inflammation, calcium deposits under the skin (calcinosis), vasculitic ulcers, slowed growth, and mouth ulcers. We keep finding out about more but that is enough!

Because it is so rare there is little research being done. There are no set treatment protocols. They just try different combinations of the same (older) drugs to hopefully get a good response.

Currently there is no cure.

Big hugs and kisses to our dear friends that have created their own Madeleine pages! Please visit them!
Marlene's Madeleine Page
Princess Madeleine page by Happy Trails Carriage


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Please leave Madeleine a message in her guest book. She loves to know you are visiting and reading. Thank you!

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Madeleine's own invention, The IV Bowl

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The IV Twister. It's always nice when Willie is running around the game trying to avoid the tubing.
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Outside Chapel Creek B&B in PA. She's under her parasol to minimize sun exposure.


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All little girls with JDM should have a Mercedes limo and driver, right? That's Mad in the middle.

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Getting arrested by a Imperial TIE Pilot at a Star Wars event. Yes, he is holding her at blaster point!
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Jedi Knight Madeleine with R2-D2


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Journal

Sunday, January 4, 2009 4:46 PM CST

I’m not sure when it’s not busy here, but I’ve been remiss in making time to update you guys and I’m really sorry!

Back at the end of July we were shocked to learn that the JDM had affected Mad’s lungs. Our pulmonologist believes that during all the years of her disease being uncontrolled that she was silently aspirating. That caused a lot of bronchiectasis.

This doctor drew a number of genetic tests and checked her for cystic fibrosis. All those tests came back okay and the Dr said she doesn’t carry the CF gene. They have her using an “airway clearance system” vest twice a day. It’s a struggle because it makes her back hurt and she doesn’t want to deal with it. This is really new because she’s never really argued about things to do with her treatment in the past…we’re still fighting this battle with her because the Dr is concerned about her catching a cold and getting sick. It could easily turn into pneumonia and be a big set back for the girl because she doesn’t have the pulmonary strength to cough and clear her lungs.

Her rheumatologist is very pleased about her other issues. We seem to be stable and rocking along, no improvement BUT no real set backs. I can live with that!

The big news lately was Madeleine making company at her dance studio. She’s in Rising Stars and they were in a competition in Houston right before Thanksgiving. Her team did a theatrical jazz number called “Trashing the Camp” and won GOLD! We were so proud of the girls for doing so well on their first go at competing. I have some pics, I’ll just have to get those scanned so I can post them. Madeleine is a monkey and they drag her on stage in a big bucket.

There are some pics here http://gregt1310.smugmug.com/gallery/6665225_K96fH#425512489_gGqdE
You have to go to the second dance in the line up and she’s in the group with jungle girls and monkeys.

Next competition is coming up quickly in early February, just before we go to Chicago. Her group has two dances in it and she’s so excited. The other teams at the studio have some incredible dances, I wish you guys could see them! These girls look like professionals…and I’m not one bit biased.

My tap class once a week is my therapy time with friends. We have a ball and laugh a lot, I’ve missed those girls over the holidays and can’t wait to see them tomorrow night.

Back in October Terry and I both ended up in the hospital for different reasons. He has some heart problems that need to be addressed that stem from his battle with hypertension.

I had started getting sick just before he was in but just brushed it off as some bad salad or something I must have eaten. On my second trip to the er with severe dehydration they realized I was having a reaction to clindamycin and I was admitted. It was a very long 11 days and I wasn’t sure in the beginning if I’d ever get to go home. They put in a PICC line and I was on TPN while Madeleine hung on every detail. When I was finally strong enough they let me go to the lobby and see her through the front windows. Mom brought her up along with William and Little Willie so they could wave to me. It was miserable being away from them so long but they all took care of things like pros. Our amazing nurse was there for mom and we couldn’t have managed things without her.

Before I was out we finally let Mad come in the lobby so she could sit with me a few minutes. Mom coated her in purell when they left and it was so good to hug her close.

I begged my way out so that I could go to Chicago for Mad’s check up and it was a very hard trip for me physically. It went fine, with mom’s help, and I came back home to finish recovering. Dr Pachman was concerned because my reaction was very similar to a Lupus flare so she sent me back with labs to get done, everything looks okay but we all know now elusive autoimmune disease can be. They just told me to be sure and never take that drug again – no kidding!


I’m glad 2008 is over and let’s hope 2009 has some good things in store.

New pics and better updates coming soon!

All our love,
Connie and Madeleine

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Hospital Information:

Children's Memorial Hospital - Chicago, IL
Medical City - Dallas, TX


Links:

  
http://www.ninds.nih.gov/health_and_medical/disorders/dermato_doc.htm   Nat'l Institutes of Health - Great info on JDM
  


 
 

E-mail Author: cgoldtx@aol.com

 
 

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