Sunday, October 21, 2012

October Fun

350mg Methopred Infusion once a week.
Physical therapy once a week.
Took care of that limp.
He is still feeling the steroid effects.  Big time.

We are contending with a stubborn ear and sinus infection right now.  2 weeks of augmentin, with a move on to a Z-Pac and we will see.

"This is the best I have seen him look".    Do you know I have heard that so many times from the doctors.  You look good too, doc.  And don't even have millions of calcium deposits or are recovering from a tough couple months.   Yes, they are right.  But I really being the one that points out the obvious, reminds the masses, WHY he looks so so so great.  Don't forget,  the big cushion of steroid we have dumped into him over that past three months.  

On Thursday when we checked in, it was our last day of Augmentin.  He didn't even make it through the 2 weeks of being on that.  We still had one more day of it.  But it obvious he wasn't right.  He wasn't feeling good.  He seemed not right.   He seemed red.  He seemed more rashy.  I don't know if the infection in his ears is triggering that or what.  But that will soon be taking care of by the z pac.   Hopefully.

The Plan
So the plan is to proceed with Cytoxan.  I don't know for how long.  Can't say I like it.   But at this point we are playing by the rules.  MOVE SLOW.  He is stable.   So no one move to fast to spook JDM.  We are spacing out the methopred infusions every 10 tens, instead of every 7.  Labs are great.  Strength is 98.9%.  Rash, pretty good.  Nail folds, excellente compared to the past, calcinosis, no change, nothing bigger.  Elbow is closed.   Still healing.   That has been a slow process.  

Our infusion was a little rough.  He ended throwing up at the end of IVIG and got red rashy, complained about his elbow.  I told them to give him more benadryl.  More zofran.   He slept into the evening, then we were able to finally go home.  It is so nice when you get your own room.   And because of last months mistake, they made it up to me.  My favorite nurse, my own room.  

Thursday, October 4, 2012


That month flew by, didn't it?

We are continuing on forward with the plan.  Methopred Infusions on Wednesday.  I am thinking that if we keep doing these, need to have them switched to Friday.  He needs about two days recovery time.

Gary's elbow is still healing.  It finally stopped drained last week.  We currently keep those band aids that form a bubble around the wound.  I am not sure I care for those but we will watch closely.

School has been a hit and miss.  Mostly miss.  I had a meeting with the teacher, speech, physical therapy, and counselor yesterday.  Nothing but wonderful.  I showed up with no make up.   It is my warrior look.  The school is accommodating, supportive, which pleases me.   I asked about him and attendance policy.  They assured me there will be no issue.  I do hope after we gently pull away the pulses, he will miss way less.    A low white cell count from the Cytoxan came back this week, so we went with caution and kept him out until it came back up.  We checked yesterday before the infusion of methopred.  Problem is the methopred and methotrexate make him feel sick so, another day.  They also had me stop an antibiotic because they believed it was contributing to the lower count.

I want to thank the unknown person who sent our family that wonderful gift in the mail.  I hope you know that you blessed our family in our time of need.   Making ends meet seems to be getting more and more difficult.  We had hoped things would be getting easier, but they are just not.  Because of you, I didn't have to worry how I was going to get Gary to the hospital.  We live 40 miles from the hospital so gas starts to become an issue during certain times in the pay period.  I pray blessings 10 fold over you and yours.  I know there are going to be changes coming for our family.  But my job is to make it as easy as possible on the kids.  Change is never easy, it is just a life lesson.  We have wonderful friends and family around us who keep our world spinning.  

I am heading to Baltimore next week.  Once again, ask and you shall receive.  Friends and family are making it possible for me to attend the Cure JM Conference in Baltimore.  I am excited.  A little nervous to leave Gary but he is in good hands.   Running the full marathon on Saturday with a few of my Cure JM Buddies.  I am honored to be running with my Blue Angel, Kelly.  She was there when I crossed the finish line in Austin in 2010.  It is going to be a great time.  The foundation is working hard to meet our fundraising goal.  I have received some pretty fantastic donations!  Thank you to all.   Donation Button over to the side bar>>>