So today is Rare Disease Day.  I think we are supposed to wear wild animal print in honor of it?  Not sure yet.  I’m sure next year we will be more prepared.  What we have found out so far is that we are so blessed, in so many ways – wonderful friends and family – wonderful support from everyone we know – amazing doctors and nurses that are taking such great care of our Maura.

Yesterday we got these:

Looks like a macro shot of Hershey Kiss right?  But if you look closer you can see that it’s one (of many) home made rice crispie treats shaped like kisses.  And each has a unique – hand-written message just for Maura.

And this is just half of the wonderful cards, drawings, and other gifts that she’s gotten in the mail.

The other half is hanging in her bedroom.  And she is loving all the wonderful books and activity books that everyone is sending.  She takes them with her to the hospital and they help distract her and pass the time while she sits through the infusions.  (And she giggles a lot when paper doll princesses wear the wrong dresses and each others arms!)  So many of you are praying for her and taking time to send her some positive energy and I want you to know that it means so much.  Thank you.

Maura is doing well.  We haven’t seen any physical signs of improvement in her muscle weakness, but the doctor is checking her labs nearly daily and seeing improvement each time.  It’s going to be a long road.  Kids with JDM can take from 3-6 years to get into remission, but at least 3…so hopefully we can get there, no matter how long it takes.

I realized that since she started not feeling well and wanting to be carried everywhere, I haven’t taken time to take her picture.  So far I only get about 5-10 minutes of my Maura, where she giggles and is silly and not crazed from all the steroids.  During those times, I’m trying to take some photos of her.  Not to track her progress, but so that she will know later in life that she was beautiful through and through, even when she didn’t feel well.  (Plus taking pictures is therapeutic for me, so it’s a win/win – might even be a win/win/win because then you get to see her happy too 😉 )

And chapstick is still a must.  In every little princesses life, of course.