Thursday, April 12, 2007

Fine-tuning this thing

I'm still trying to figure out the content filters and "crawlers" for that thing on the side, but I think I at least understand how it works. So now I'll talk a lot about how all our Special Needs have been so important in bringing me to this point.

Down syndrome: When Sofia was born, 26 months ago, we were already prepared for her diagnosis. Trisomy 21, an extra chromosome on the 21st pair. But being involved in the Down syndrome community has been an incredible learning experience for me these past 2 years. In the "virtual" world of the Internet, I've "met" so many people with such varied experiences and backgrounds. In real life, my life has been incredibly enriched by all the amazing people who help me provide Sofia with the best possible education.

Food Allergies: While Micah's food allergies have not provided us with nearly as much fun and amazement as Sofia's DS, dealing with food allergies has been an empowering experience for me. He's up to 12 foods:
  • Tree nuts
  • Peanuts
  • Sesame
  • Soy
  • Grapefruit
  • Apple
  • Mint
  • Zucchini
  • Yellow Squash
  • Sea Bass
  • Haddock
  • Black Bean
Plus he's allergic to Penicillin. I found a wonderful site to order "taggies" for him, from a place called "Letters 'n' Wood" (link is to the right). Micah's tag is customized, and says "Severe Allergies/Penicillin/All Nuts/Sesame/Others". He pins it to his shoulder each morning, and is proud to show it off to people. He is a very responsible little fellow, and very cautious about what he eats.

Dyslexia: Sam was diagnosed with a "Specific Reading Disability in the English Language Arts", which in another state would be called dyslexia. Right now he is making terrific progress, thanks to the amount of time and energy his school has put into his education. They use the Wysnia-Kapp method for reading.

Crohn's Disease: My dear husband has suffered from Crohn's since he was a teenager. It gets worse when he's very stressed (which is quite often), and when the seasons change.

Skin Cancer: Yup, that's mine. I had a malignant melanoma in situ right after we got married. Now I slather on the sunscreen, and go for screenings every 6 months (more often if I see something that worries me). I'm just coming out of my sun-phobia, after 8 years, and learning how to live in the light. This summer it will be interesting to see how I handle the pool club.


1 comments:

Brian said...

The most important thing is to find potential melanoma lesions early while removal can be a cure. People at high risk (especially if you have already had a melanoma) need to follow their skin closely. The traditional ABCD criteria can help guide risk assessment. A, for asymmetric lesions; B for moles with irregular Borders; C, for colors in the lesion; and D, for diameter greater than the tip of an eraser.

More recently physicians have recognized the importance of moles that are new or getting larger in predicting high risk lesions. They have now added E for enlargement to the criteria and many recommend following the ABCDE’s. Having reliable information on whether a mole is changing increases the specificity of the skin exam and could therefore reduce the over-diagnosis of suspicious lesions.

Although dermatologists almost always ask if you have any new or changing moles most people cannot accurately answer that question (particularly those with numerous moles and the greatest risk). One way to approach this problem for people at high risk is to use Total Body Photography to document the moles on your body. However, this is an expensive procedure (often costing $400-$600) that most insurance providers will not cover.

There is now an inexpensive software program that allows people to use their own digital cameras at home to take their own body images at different time intervals (maximizing privacy). The images can be scaled and aligned and compared using a personal computer to allow for the efficient recognition of new or growing moles. This software was developed from funding provided by the National Cancer Institute and can be obtained by going to the website www.dermalert.com