Wednesday, June 22, 2011


We had our infusion today.  It went very well.  Smooth sailing.  Levels have smoothed out as well.  IV on first try : ).  Our nurse was again, 10 months pregnant but did fantastic.  She didn't even look tired.  She did give Gary his benadryl right into his IV with no dilution which burned like the hot acid in his vein, HOWEVER, he quickly went to sleep like it was a night night medicine.  The IVIG going in you can tell are hard on him.  He sweat and sweat and sweat. His little heart was popping out of his chest.  You could see the blood pumping through his neck.

Gary's calcium deposits I think are looking better.  Always hard to tell.  Energy is good.  He does have a scratch on his eye that faded in and has not acted like a scratched.  But I am keeping an eye on it.  If it doesn't go away, we can say it is indeed an ulcer lesion caused by his dermatomyositis.  If it heals up, then  it was obviously a scratch.

I am having trouble concentrating.   T-Minus 3 days till marathon time.   Eeeekkkkssss.  Tomorrow we get to have dinner with all of our Cure JM friends.  Looking forward to it.  In regards to the drama going on with the foundation and the hospital,   I wait to give my opinion until after everyone has left town, LOL!!  Cure JM Mafia is in town.   You would be amazed what passion and emotion is behind mothers with this disease.  Then we are all surprised someone would say certain things.  Are you kidding me?  It's like jabbing a hibernating pregnant bear with a stick.   Not hard to get one of us to fly off the handle when it comes to gathering information on our childs rare disease.

1 comment:

  1. I am glad today went well our"normal"! 10 months preggers huh LOL...your funny! Ooooh Benadryl does burn when it goes in....does Gary get Goultron papules? Mine are coming back with the decrease of the steroids and I showed a pic on my blog and it hurts so bad and I was just wondering if you had a remedy for it...? Blech....ok so poor little guy the sweats do come with me to when they insert all this stuff in your body he is such a trooper as our you and always always in my prayers so much so I talk about ya'll as if I know you in real life! Your considered a dear friend and so is little Gary! Yay that you get to meet JM moms...I wish I could come and join in does Gary love his new playground...this sun is killer on me this year I forgot my sunscreen and drove to the store came back and it felt like I had been doused in acid and it burned so bad I had to litteraly put ice packs on my face and my eyes swelled it was terrible next day it burned a little but was fine good grief I know better...did you know they made spf 100 yup had to go buy some geezy...yay for your upcoming marathon you sound pumped!