Monday, November 2, 2015

Not what we hoped for...

Last IVIG Buggy had, the doctors were optimistic that she was in the beginning stages of Remission, which is the best outcome thus far for any child suffering from JM. They were even starting to wean her off the steroids.

Unfortunately her rash is reappearing, and she's weakening once again. JDM isn't giving up as easliy as we had hoped.... But Bug is a fighter, and she has all her family and numerous strangers praying for her.

Kayla contacted the doctor last week when the rash first started to appear, per the doctors orders she was to move the steroids dosage back up to 8 ml. A week later, Buggy's face is swollen more, and the rash remains.....
Another call to Dr Schikler and he wants to continue with steroids and see her the Wednesday, the nurse instructed Kayla to pack a hospital bag...
They will most likely admit her and start the aggressive treatments of  IV steroids and IVIG.

Below you can see in the photos the difference one week can make.

Right now Buggy insists she go to school,  She is such a Brave,Strong, Little girl.... all the children battling this horrific disease is BRAVE!!!

It's difficult to see the rash in these photos... but it's there, if she's exposed to the sun it brightens and becomes more inflamed. We are keeping sunscreen on her and out of the sun as much as possible.

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