As you can imagine with a chronically ill child, there is a lot of talk about our “new normal.”  And it’s true, our family life is different than it was and different than I thought it would be.  But one thing I’ve learned is that most everyone has challenges, whether it be a chronically ill family member or just a fussy baby (which in the last week I have learned a little bit about!).  So even though we have a “new normal,” I’m beginning to think that it’s just normal.

Maura had her appointment with her specialist earlier this week.  He is possibly the kindest, smartest, most amazing person (other than my husband of course 😉 ).  He didn’t even bat an eye at the new baby in the room, just paid attention to Maura, knowing that this is her time.  She got a glowing report from her last set of labs and her height growth and physical strength is “normal” for her age.  So the next steps are to keep slowly weaning off the medicine and hope that she will maintain her health as we do that.  We are hoping to see some of the effects of the prednisone reverse as well – so looking for her to lose some weight and for the cushionoid face to go.

In the meantime, we have been enjoying doing things this summer that she would not have been able to do last summer.  I never thought I would be so excited to see her do simple everyday tasks, but I now know how fleeting that ability can be.  This weekend we are going to the CureJM conference in Chicago to learn more about the disease, treatment, and new research.  The CureJM foundation is a wonderful group of volunteers that is constantly working to fund more research.  Juvenile Dermatomyositis is in the orphan disease category.  What this means is that not enough people are affected by it for research to be profitable to pharmaceutical companies.  Makes me so sad to think that there might be a cure out there, but that these sweet kids, who are fighting so hard, aren’t considered profitable enough :(.  So much of Maura’s treatment relies on medicines developed to treat other diseases, hence why she receives Chemotherapy medication.  Yearly, CureJM runs a fundraiser in conjunction with its conference.  If you’d like to sponsor Maura for this year’s walk, any and all donations are greatly appreciated.  Just follow this link http://curejm.donorpages.com/ChicagoHalfMarathon/accouch

A heart-felt thank you to everyone who has donated and supported us through this journey so far.  We wouldn’t be where we are without your support, help, and love ♥  Having said all that I’ll leave you with some photos of Maura doing “normal” things 🙂 !

Seriously – who could say no to this face!?!?

Bookworm Gardens with friends 

Playing with cousins (last year one of them had to lift her down the front stairs here and now she’s running up and down them 🙂 ) 

And strawberry picking, something we couldn’t do last year.  We are so blessed to have come this far 🙂