Merry Christmas

Merry Christmas to everyone.  The Rituxan went good.  Gary didn't seem to have any ill effects from it.  We are scheduled to go back in for our second round on Monday.  Gary will be there overnight.  Hopefully we will get our own room, but most likely not.  Last week it was interesting.  We got check into our room and the patient that was already in there immediately complained.  I was a little shocked.  I told our nurse, who I could see right through and knew right away when that mother popped up out of her bed and headed straight for the nurses station that she was going to protest.  Her daughter was older (13 maybe).  I get it.  Gary is chatty.  But the part that floors me is the less than ideal rooms we have been put into over the past year and half, including being accidentally stuck in with a contagious patient.  I would express my displeasure, and not once did they move us. OK once, it was when we were in with the poor kid who was having loud psychotic hallucinations about The Grinch.  That time I didn't ask they just moved us.  I so badly wanted to ask that Mom what she said.  I also know however, the nurses were not happy with her.  It came up several times because we moved rooms certain things were still back at the original room.    Anytime it was mentioned a certain regard came off of each nurse.  The upside was we did get our own room for awhile.  We also had a window.  Down below our view included the Seattle Fire Department practicing drills on the vacant condo's below.  Yay for the Children's Hospital Expansion!  I pray that no patients will have to share a room again.

Gary is looking pretty good.  I thought earlier in the week that some of his calcinosis was coming through his skin but it ended up being a infected molluscum.    I do think it has calcinosis under it but I was kind of upset there for a few days wondering if this was the start of the pain of these popping through.  The dermatologist has stopped treating the molluscum.  He did recommend trying an online remedy, Molluscum Rx.  It's a little pricey so I am not sure.  One of the things I have started to consider is a gluten intolerance.   I struggle with this because I do.  It will be hard.  But I figured I will talk to the doctors and see what they say.  I guess the reason is because so many times I have been offered advice about Omega Three, fish eyes balls, things of that nature.  It has all been taken with appreciation. However.  This disease is serious.  It can be compared to cancer in my opinion.  My mind is closed to any kind of natural care and things like that.  What if I did and his disease advanced?  What if it didn't work?  There is a person on a support board who is always pushing some kind of product.  He pushes it to the point it is offensive.  Asking us parents 'how dare we not explore other treatment and put the terrible drugs into our childrens bodies when he has found something that works', not a direct quote but it is how he made me feel.  What if we all followed what you were insisting on?  This disease proves that no ones is the same.  Each case is a little bit different.  Each patient responds differently to each medication.  I understand you would want to share what worked for you.  I would too.  But to play upon the fear in parents is crude.  And what every patient did what you are so passionately pushing or "selling".  I can guarantee a lot of children would have disease progression along with all the complications that come with JDM.  I suppose it is all about approach.

I know I need to open my mind more.  I also consider that fact that this isn't my body.  It is his.  It's Gary's.  It may be a little different or maybe something I would try if it were my own.  But Gary would have to live with whatever decision I make for him.  He already does.  What hard way.

We are blessed : )

Merry Christmas to you!

Merry Christmas Summer : )