Monday, January 1, 2018

2017 in Review

Well here we are :)!  It's 2018 and not once did I post in 2017.  I am no longer a stay at home Mom so things change with time and priority.  I have also learned to deal with Gary's medical condition in different ways at this point in my life.  So lets so over some stats........Gary is now 10 years old.  This spring will he his 9th Juvenile Dermatomyositis anniversary.  The last couple years have been better and better.  Gary is in 3rd grade.  He is doing pretty good.  Academically he is behind in school but makes daily progress.   Medication wise we go every two weeks to Seattle Children's.  Gary still has his port in his chest that they placed 6 years ago.   He gets IVIG and Tocimizilab every two weeks.  We are working still to get off steroids.  Currently down to 3mg.  Soon we will supplement with a different type of steroid as he comes off.   We looked into putting Gary on a growth hormone this year to get him caught up.  But the doctor said he was confident that his growth would catch up.  Gary's dermatomyositis has definitely left behind war wounds.  The calcium deposits have improved but them going away by themselves, surgically removed, and he has out grown a few.    The liver damage the medications caused we continue to keep an eye on.  We are vigilant for flares, although I admit my focus is a bit more limited.  So I have to be careful of that.  Keep up the good work, Gary!