Our New Normal [s] » Our little family's realization, that there is no normal

Last Week.

I was in a bit of shock.
This week, I am “full steam ahead”.
I am so angry~ Here’s a little background:
Over a year ago, I took Vivia to the doctor because she had a nasty looking rash on her face that would not go away. We took her in, and the doc diagnosed it as “slapped cheek” or “5th’s disease”.
Well, months passed, and the rash never went away. Months and months.
We started noticing that it got worse in the sunlight and when she was hot etc. but we just kept waiting, thinking it would go away- because the doc had said it could be up to 8 weeks before the rash went away.
After some time, we also noticed the development of little “scales” on her knuckles. And occasional lesions on her face and chest or back that can look just like really bad mosquito bites, but aren’t. Some of these lesions that she gets near her eyes or on her eyelids will actually give her the appearance of a black eye- like she had a couple of weekends ago.

Then, we also started noticing more pronounced rashes developing on her face, elbows, knees and ankles. Again, seemingly exacerbated by sunlight. We started having her wear lots of sunscreen, and visor hats, and that did help- some.

I took her in again to the doctor who had diagnosed her “slapped cheek” and told him that it was getting worse, and was not going away. At that time, he recommended a visit to the dermatologist. Who couldn’t get us in for 3 months!

Long story short, after several painful and scary biopsies, she’s being diagnosed with this:
http://en.wikipedia.org/wiki/Juvenile_dermatomyositis
an auto-immune disease of the skin and muscles. It’s not contagious. It’s genetic, apparently- and they don’t know what causes it- but there are triggers like: sunlight, vaccinations, illnesses (viral or bacterial), and injuries. Basically anything that your body’s immune system revv’s up for.
So, in layman’s terms, her body is attacking itself.

Please just pray for her as we now have a name for what to stand against.
And also pray that it doesn’t develop into any of the worser symptoms- that I don’t even want to name bc I will not speak it.

The results of the two biopsies she had today are still out, should know more on Thursday.

She’s only 5, but she does really hate her “rashes” as she calls them, and complains that other girls don’t have them, and so why does she? etc.
I know it could be so much worse, but it is really crummy- for her.

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