Update!!! (finally)

It's about time I got on here and gave everyone an update. I apologize for taking so long. We've all been very busy but it's no excuse - if you have time to read I should make the time to write. I'll promise to try and do better.

Gracey started first grade this past Monday. She's had her bag packed three weeks prior and couldn't wait till the day came. And that day went very well. She has all the same friends in class from last year, a new teacher and new room. She can even look out her window and see Daddy's bank! Lucky her...

Physically she continues to do very well. We've seen no muscle weakness or issues since the last doctors visit. For that matter her strength seems to have maxed out about 4 months ago allowing her to score the maximum on the physical test. I think her rash is 98% gone. Her facial color is very good and we've even had a slight switchback to the "old days" when we needed to keep her skin moist or risk exzema outbreaks. I might be seeing only the slightest remnants of papules on her knuckles and finger joints - but it might be my imagination. They look extremely good. We go back for a checkup with the rheumy the end of September so will know more then.

We continue to apply large amounts of SPF50 daily and Gracey now does this as a natural part of her day. The school once again was very receptive to Gracey's needs and are making every effort to accomodate her. I think this year will be even better than last year!

Gracey is looking forward to the trip to DC later in October. She is practicing for her 1 mile run and doing terrific with it. I think the trip will be great for us all!

By the way... Gracey still emails Jennifer Love Hewitt regularly. They talk a couple times a month and discuss the TV show. JLH really turned out to be a great person for Gracey.