Clinic Day

Today is our check-in with the doctors after the whole ER visit.  I called on Monday to see what his labs were that we had done on Friday.  A nurse called me back and gave me labs I don't tend to look at.  I am always on the look out for muscle enzyme labs which indicates disease activity.  I wanted to let them know he was still a little sluggish but nothing that required us to be seen sooner.   She noted some platelet levels and sed rate.  Something about Gary having been sick or had the flu.  I shook my head at that because he had not been sick.  I was under the impression he had a flare from his disease.  I don't waste my energy or breath clearing things up sometimes because it doesn't matter.  It only matters to the doctors.  I wonder if that is a bad attitude on my part.  Maybe I really should take the time to explain to her that the official diagnosis of that visit was a JDM flare.    But then again, like I said, I see the doctors today.  I even am going to have the pictures I post on my blog developed and bring them with me today.  I want to show our main rheumatologist where the calcinosis are at.  Gary does have a few that have tripled in size since last week.  The inside of his legs and groin area seem to be riddled with them.  I found a new one on his elbow.  Calcinosis is common on the joints.  They don't bother him unless you grab him to pick him up a certain way.  I am fine.  As long as they stay where they are at.  If they inflame like they did last week, well off to the corner I go to rock back and forth in a fetile position.  Gary overall has been better the past couple days.  His energy came up a little bit.  Now we are back to having trouble sleeping again though.  My children have never been great sleepers so through a bunch of meds on top of that!  GO TO SLEEP KID     I feel better now.

I Have Other Children


I know all's I ever talk about is my the chosen one.  So a little blip/update on the other two.  McGuire is doing pretty good.  He started middle school this year.  School is a big challenge for us.  When I am trying not to fret over Gary, thoughts of McGuire will enter my head.  McGuire is working hard to find his way.  He gets confused easily.  He seems to have trouble grasping things, but works very hard.  I need to get up to his school to make sure no one is just scooting him along.  The whole campaign with "not letting kids fall thru the cracks" seems to have dissolved with the new economic conditions of our times.  I will not let him be passed up or passed on.  Just because my kid doesn't learn or operate like all the other cookie cutter kids, doesn't mean he should have to step off the trail.  Why don't you get him into tutoring?  Sure, let me go pick money on my money tree to pay for that.  Why don't you take him to the doctor to get help?  Speech Therapist, Neurological Evaluation done at Mary Bridge, and consults with our pediatrician and endless meetings with the school for extra help.  We are going to get this handled.  Its like running a marathon.  One foot in front of the other.    My princess, Elexis, seems to be doing very well.  She is the typical girl, emotional, craves attention.  They are both so pretty and tender.  I am trying really hard not to screw them up, LOL.  It's funny, sometimes I feel guilty for taking the time to run.  A lot of Mom's, even me, say my kids come first.  They are number one.  Well, God is obviously first. But I think its a fine balance.  You have to be your best too.   Spin those plates of my very blessed life.