Monday, December 28, 2009


Our Christmas Eve MRI went smoothly.  Gary was a hoot on laughing gas.  The team was very impressed with his cooperation.  They said toddlers can be difficult because they don't like the mask on their faces.  But the mask was attached to a green balloon.  Each breath Gary took it would go up and down.  One inflation of the balloon, he thought that was pretty funny.   That first breath being gas made him want that mask on to make the balloon go up and down.  Giggling commenced.  It was precious.  It wasn't long before the laughing gas turned into the smell of the ocean, as the nurse called it.    My sweet prince was then in a sweet slumber.    We were asked to leave.  So Mom and Dad went up to the hospital cafeteria to grab some Christmas Eve breakfast.   He was returned to our room all hooked up.  He had what looked like a tube but really was just hold him tongue down.  That was hooked up to oxgyen.  The nurse came in and watched him.  As soon as he took a deep breathe she removed all the stuff from his mouth.  He slept for another hour.  We were able to get hisIV out while he was still out of it a bit.  The ride home he was quiet.  We stopped and got him a Christmas Eve Cheeseburger and chocolate shake.  He was quiet the rest of the afternoon.  He did well!

The doctor called 6 that night.  He said overall it looked good.  There are some muscles in his pelvic area that show signs of inflamation.  The doctor says there is no way to tell if its old inflammation or new.  So we were cleared to go down again on his steroid dose, from 4ml to 3ml.  That is a good thing.   Our next infusion is on January 4th of steroids and IVIG.  Then we have an appointment with the dermatologist on the 5th.  Someone actually asked me if he has chicken pox!  I am hoping the dermatologist has answers to what this particular rash is.  The rheumatologists bounce back and forth on whether they think it is from dermatomyositis. 

I have my own frustrations with the doctors.  I know they do the best they can but sometimes I think even they forget they are human.  I was asked, "do you pick out every little thing with him?"    Meaning do I pick out everything I think is wrong with him.   I replied, "why yes I do, wouldn't you if your child had a disease?".  No worries, just weeding thru an ego some young docs tend to pick up.   He had made that comment after I had told him about Gary seemed to be having a little trouble on stairs again.  It was nothing significant but a change.  I would think they want to know every little thing.  I would if I was a doctor. 

Last month they expressed concern over his liver.  The levels for the liver had come back down I guess because it was not even mentioned.  Since we are seeing the dermatologist next week, I will ask what he thinks about that.  I know he is a skin doctor but sometimes when something is off in your body, like the immune system, it can cause a rash. 

I am so excited!  I got my first two sponsors!  Really excited!  I ran 10 miles yesterday and I have to admit, it was a rough ten miles because it included hill training.  I read the Austin Marathon is very hilly.  PRAYERS welcomed!  Thank you to my first 2 sponsors.  It put me in tears this morning.


  1. I betcha he was silly on laughing gas! He is such a trooper :o)! I hope and pray that the inflammation found was old and not new! You guys have come so far and are sooo on the road to REMISSION! Keep on trucking up that hill your almost there!

    Oh and I feel ya on the new Dr.'s and there comments sometimes! Been there done that! Especially when ya go to a Research Hospital and after feeling like a total guinea pig they finally realize what you are trying to tell them and go oh yeah that is something.... Well yep been trying to tell ya that for an hour!
    Hang in there your so strong and Gary is so lucky to have a mommy like you as his advocate!

    Thanks so much for running the Marathon and yippee on getting 2 sponsors already :0)

  2. Erika,
    So happy to hear Gary and your family had a great Christmas. You have been in our prayers and on our heart so much. OK . . . tell me about this sponsor thing . . . are you planning in running a marathon? How do I sponsor? Love and prayers,

  3. HI Pastor Cathy! So GREAT to hear from you. Thank you for your prayers. Sponsor thing is just a donation you can make to help me raise money to find our cure for Gary's disease. And YES I am running 26.2 miles on Feb. 14th in Austin TX. (My stomach just flipped typing that) I created a link just for you :) at the top of my blog that will take you directly to my fundraising page. I hope you and your family had a wonderful Christmas as well. Much Love!