Wednesday, August 11, 2010

And the great taper continues.......

Last month my cheer leading pom poms were high in the air.  This month I have brought them down to my sides.  There still twirling, just at a different level.

Yesterday was as expected.  Completely draining.  I knew it would be.  I ran ten miles the night before because I knew I would not be able to get my run in yesterday.  BLOG JUMP HERE   : )

Gary cried when we turned onto 405.  Gary cried when we turn into Children's parking lot.  He went on and on how he didn't want to talk or get a shot.  Like a broken record he repeated that over and over again.  How he didn't want to talk to anyone.

We started out at the dermatologist.  We "talked" *smiles* about what treatment we were going to use for the molluscum.  There is the standard "freezing" off but its too uncomfortable.  We are going to try a medication they use for adult gential warts.  ************I stare blankly and instantly think, I am so not picking up that prescription***************.   Of course Children's Pharmacy doesn't fill the medication.   He also added another tummy protector.  I guess they have had success with it having an effect on the molluscum.  I was surprised rheumatology gave the ok on it since he is already on a tummy protector.  Putting him on two at the same time.  They explained it works differently then the other does but I was concerned it interfering with his JDM meds.  But we got the A-ok.   So who wants to pick up that medicine for me?  No worries, I will just have the love of my life pick it up.  He doesn't need to know what its for : )  I will inform him afterwards.  LOL     Pure Evil.  I know.   "Honey make sure you ask for consult from the pharmacists, this is a new medicine."      I will pick it up.  I will just use my loud voice.  "Before I turn this in I need you to know this is not for ME!" , "Before I pay for this,  I need you to know this is not for ME!".   This is fun stuff people.

After the dermatologist we headed over to the infusion clinic.  They were busy yesterday.  It was loud in there.  IV went in no problem.  Well, the usual.   But at least it was a one poke day.  The benadryl went in his body a little rough this time.  It stung has they ran it in the IV.  He acted like it was acid or something.  We kept the cool rags on his arm until he zonked out.  Our nurse was great.  On top of it.  Our rheumatologist came down to the infusion center to chat.  She asked if we could come up to clinic when we were done.  I was surprised how well Gary did with all that.  He gets a little uncooperative.  Plus its the end of our doctors day so she I am sure has had enough herself.  I told her he is still doing good.  I am not as happy as I was last month but realize that his body will need to adjust to the tapering.  I told her swelling seems to be coming in here and there.  One minute he will look fine the next red and swollen.  The nurse had made a comment to her that he looked red and rashy when he got to the infusion clinic earlier that morning.  I told her the dermatologist nurse also commented on that.  "He looks uncomfortable."   The doctor explained she thinks that with the disease it has made his blood vessels and capillaries "leaky".  She said that she has noticed that with her other JDM kids.  Interesting theory.  I said, "as oppose to active disease?".    She said yes.  Hmmmmm.   and more hmmmmmm's.  I mean anything is possible.  I just not sure if I completely agree.  Despite a little rash, his labs are holding steady.  She paused and looked at me.  I looked at her.   "Feel like being brave."  I told her, "only if you are".  So we are continuing the great taper.  I gulp this time.  For the next two weeks we will go 1ml then 1/2 ml then back 1 ml.  If all goes well, after that two weeks we will go to 1 mL every other day.  Plug my nose, here goes the cold water.  Jump in.

Just in case you forgot what calcinosis, it is calcium deposits.  Here is a link to a recent a report that I barely understand but its fun to try.  HERE  She felt the area's I had mentioned I thought I felt a little something.  Right above his hip and across his chest.  She stated she was pretty certain that is was indeed calcinosis.  If you were to tell me that he would develop calcinosis 6 months ago, I would have freaked out.  But this whole process has taken me to a different place.  He can have calcinosis.  That's fine.  As long as it stays where its at and goes away on its own then I am fine with that.  Oh yeah, one more condition, it doesn't hurt him.  It makes sense though.  Reports say that calcinosis can occur as the bodies reaction to damage or previously inflammed tissue or muscle.  We use to lift Gary by placing our arm across his chest, instead of lifting him up under his arms because that was damaging the skin under there.  Plus the reflex muscles to bring his body with  him when you lifted him was gone so it really propelled that damage.  Placing our arm or hand across his chest  was damaging that tissue as well.   As long as those calcium deposits stay where they are at.

At this Point
This morning Gary has been making frequent potty trips.  Complaining of not feeling well.  Then eats a peanut butter and jelly sandwich.  Three year olds.  Unstoppable.  We are off to try and school shop.  May need to wait to make sure he is up to it.


  1. Wow! that does sound like a pretty draining day for all of you. Good decision to get your 10 miler in yesterday. I'll keep Gary in my thoughts and prayers. I still need to do school shopping too...

  2. I cried when I read this post! He is such a little trooper and you are just beyond awesome and such inspirations to me!! I don't blame him for crying when he see's the hospital, I am 32 and I shake and cry when I see JHU....

    So the great taper continues, fingers crossed!!
    Why do they give Benadryl with Rituxian? Is it to prevent reaction? They are still on the fence with me on IVIG infusion or Rituxian infusion and will know hopefully by tommorrow and I am a ball of nerves! If you get a sec would you care to email me? I have a few questions about Rituxian! thank you girlie

    Boo they had to stick him but yay it only took one try!

    I laughed right out loud at you not filling the prescription you would have your hubby do it....that is totally something I would do and then tell him later hahahha

    Hope ya'll have fun school shopping

    love you

    Hang in there....I am right here with ya with my pom poms ;0)

  3. Keeping my fingers crossed that it get easier Erika. Dammit, I hate the fear the kids have before the docter visit. I used to have to bribe Sami with a present EVERYTIME she had to go get her shots and any tests we had to do at Childrens. Well worth it though since I cant get the shots and IVs for her. Wish i could have though. Call in the prescription here in woodinville, I'll go pick it up and glare at the pharmacist if they give me ANY kind of weird look!!! :) xo Kelle'

  4. I am glad to here the infusion went well and that you get to continue to taper. We are still praying for you and your family. Kya asks about Gary all the time and he is the first name out of her mouth every prayer. One thing about being a cheerleader is you have to keep cheering even when you aren't ahead. That was the part that I hated! But you are ahead so get those pom poms back up high!!! Hang in there mama tiger!