Kindergarten Graduation Picture Day

Today is the last day of Gracey's May, 3-day IV pulsing. She is doing extremely well through this round. Her rash has remained very mild and almost non-existant. The worst part, as reported by Gracey, is getting the IV started and the long 8 hour days hooked to the IV pump. But today is her favorite. After the IV is over everything is removed and she's off to play for another month... maybe longer if the doctor spaces her meds. We'll keep you updated on that.

Today her kindergarten class is having their graduation pictures. So that we don't miss them I am getting Gracey ready to go up this morning. We'll pop in, get the picture made then head back to finish the IV. Her school is wonderful and works with is any way possible to accomodate our odd schedule.

Happy Graduation, Gracey!!!

Continued progress...

Next week is an IV week followed by another checkup with the rheumatologist (sometime in early June). Gracey has continued to progress with good, strong muscles and increased flexibility.

She still has a very mild pinkish tone on her cheeks - but it's very minor, nothing compared to last year. The intensity does change based on the weather (cold, hot, dry, humid,...) or her physical temperature (crying, running, moderate physical activities). She also exhibits what seems to be typical for JDM children a slight flare up of the rash on her face just a few days before getting her scheduled IV's.

I have been checking her nail beds every week for the little blood vessels you see in a JDM child. Currently I can no longer find any. Of course, this is me looking but historically I've had no problem seeing the vessels. But now they're gone. I hope this is yet another good sign that her JDM is moving in the direction of remission.

Growth seems to really be kicking back in! In January we measured about 1/8th inch of growth. Not much but it was something. Upon measuring her this past Wednesday (5/9/2007) she was a full 1/4 inch taller than in January. She is also finally starting to get a loose tooth. Both of these events are a welcome sight. The prednisone has slowly been tapered down since November 2006 so to me these are signs her body is starting to take control again.

Kindergarten graduation is in two weeks and she is very excited. We've met her first grade teacher and she is a wondeful lady. We are very thankful for the school Gracey attends. It is a private school with a good number of students - but not too big. They have really taken care of Gracey this past school year and helped us (the parents) feel comfortable about leaving her there each day.

But, more than anything, I am extremely proud of Gracey. Yea, Gracey!!!