So through this whole “our child has a chronic disease” thing, it’s sometimes hard to maintain perspective.  Some days I’m angry, some days I’m sad, others hopeful, and others all of the above, sometimes at the same time.  The truth is this, it could be worse and it could be better.  It is what it is and how we choose to tackle daily life will be a big part in how Maura recovers.  What I can do is be grateful for all the blessings we do have – a wonderful medical team, amazing friends and family, an amazing home, and most of all  – hope.

We spent our week waiting on lab results.  Early in the week the results were elevated, mid week and at the end of the week they were back down.  We are learning all new acronyms, CPK, ALT, AST, SED, etc. and I hope there will be a day when we don’t think about them so much.  With all the medication there are a lot of side effects and we are working hard to help Maura avoid as much as possible.  Steroids can cause a lot of weight gain and an effect they call “moon face” so we are on a gluten-free, low sodium diet.  It really seems to be helping stop more inflammation from happening.  It’s kind of hard to talk her into some of the things that are now a part of her reality like staying in the shade, wearing hats, staying inside during the middle of the day, but hopefully her perspective will change as she starts to adapt and understand.  This weekend and especially today we finally saw a little bit of Maura starting to shine through.  Here’s hoping that we’ll see more and more of her each day.