Monday, February 28, 2011

Feb Infuse

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We had a another infusion.  Labs look great.  Gary is doing good.  This infusion was a little rough.  The benadryl and tylenol wore off at the end of the infusion.  He started crying and got those little red hives on his chest arms and back.  The steroids are making him unpleasant.  I got socked in the nose twice yesterday.  What can you do.  

This is the part I am surprised hasn't come sooner.  The part where this whole thing isn't new to anybody.  The part where everyone seems to go on with things.  The part where it becomes normal.  I don't want it to be the normal but it has too.  It's amazing to me the emotions I go through STILL with all this.  I still want to feel upset especially when things change or after an infusion.  It's the part where you yourself to battle through.    When life goes on.  It feels like going to the doctor, and accidentally being left in the exam room.

Wednesday, February 9, 2011


We had our clinic appointment.  I love my blog!  I don't care if no one ever looked at it.  I mean, it is nice to keep everyone updated but really this is an outlet for me (in addition to running, wine, and talking to my sisters).  I saw someone had posted that people keep blogs to make themselves think someone else cares.  Well, so be it :)  LOL.  I instantly laughed at that remark.  Life is a matter of perspective.   If you can't see perspectives, life tends to be a bit more difficult.  That comment was made by a person who most likely has never been in a situation that solicits hurt or difficulty with there children.  There is a desperation that comes with the process of dealing with this.  The desperation to get rid of the feelings that twist our hearts as mothers.  Ok blah blah blah
s o r r y  Speaking of heart twisting.

Gary has been good.  ( I think I say that every time in effort to paint the full picture )  Gary had another good response with Rituxan up until about Monday.  I was ready to go in to the doctor to say, "I think we should lower down on the steroid again, he has been doing great."  Sunday, however, I noticed he was wearing purple eye shadow.  For a split second I began to search for a particular color in my make up to see if it was there.  Then I stopped and looked closer.  That's not purple eye shadow.  I asked him if he "bonked" his eye.  He said no.  HELIOTROPE  A rash children with JDM get.  A rash he has had before and it's back.  His cuticles this past month had been great.  Before you could see with the naked eye capillaries that were bursting and bending. They were looking beautiful.  I couldn't see a thing.  Until Monday morning.  With just a flash light I could see activity again.  The roof of his mouth has a few purple dots as well.  Monday I was upset and anxious after discovering this.  I couldn't wait for Tuesday to get to his appointment to speak with the doctors and share my frustration.  It lifts you high when you look into your three year olds face and see that normal boy.  No signs of a disease.  Then in one day to turn around to see that face going away and being replaced with purple and inflammation.  The very thing  we keep fighting and fighting.  *If our doctor ever finds the way to my blog, I don't mean to offend anyone* BIG BUTT, I didn't like what she had to say.  I don't agree.  She said she thought his cuticles looked better.  She even handed me the light to look for myself.  I HAVE SEEN THEM!  I took it and looked and thought they look like CRAP.  So the whole twist to the appointment was that Gary has sprained his wrist the night before playing with his brother and sister.  He get complaining and complaining about it.  We were sent to X-Ray because he was getting more and more uncomfortable.  So we wrapped up the appointment and got down to X-Ray.  Just a sprain : ) I am left with rationalizing everything.  I don't know what is causing me to so very frustrated.  We are still a few months off from hitting 2 years worth of treatment.  2 years is not guaranteed.  There are patients who are on medications for years and years.  It's funny you go along fine.  "How's he doing?"......"Really good, thanks"......Then like my sister said to me yesterday, some days, its like I am finding out for the first time.  Like yesterday was the first day I found out my kid has a disease.  I know it is from going along saying "shruggs" we are getting use to this now.  We except it is apart of our life, and we just need to deal with it.  NOT TRUE.  It will sneak in and shove you down.  I trust God with all my Heart.  I trust He gives me these feelings so I am the best that I can be.  If I didn't feel and deal, Gary would be at risk for not getting the care he needs.  I would to sit there and argue with the doctors.  But there is no use in this strategy.  The doctors are human.  Gary's disease and his body are going to do what they are going to do.  *Razzing* the doctor and arguing doesn't get anywhere.  I do advocate but that is a art form in itself.  There is a time and place for everything.
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Still has it.  The large one on his arm has gone down finally.  It is a small lump now instead of a large one.  I think that if they could see all the calcinosis through out his body, they would be surprised.  No one takes the time to really explore it because there is nothing they can do about it.