Latest Check Up

Gracey had a check up on June 4th and we received amazing news!! For the first time since Gracey was diagnosed, she scored a perfect score (52) on the CMAS (Childhood Myositis Assessment Scale). This is almost unheard of at her young age. We were told that typically a six year old will max out at approximately 49-50 due to certain sit ups that must be done without counter balance. We attribute Gracey's score to her determination and prayers.

Gracey also had a pelvic MRI to determine how much muscle inflammation still existed. The radiologist stated that on first glance the MRI appeared "normal". After comparing the new MRI to last year's MRI, the radiologist determined that Gracey's muscles have little to no inflammation. This was great news because it shows how well Gracey has responded to the medicines.

The rheumatologist was very pleased with Gracey's progress. The doctor said something on this visit that she had never said before: monocyclic!! Monocyclic means a single occurrence of the disease resulting in remission without future flair ups. The doctor said that Gracey was looking very well and that she was responding to the medicine extremely well. The doctor did not guarantee anything, but said that Gracey's case of JDM could be monocyclic! This was the best news that we have gotten to date.

Gracey will remain on her IVs every four weeks, but the doctor told us that if Wes and I see improvement in the rash on her face, then she will space Gracey's IVs to every five weeks. The doctor is anxious to get Gracey off of the steroids as soon as possible, but not to the detriment of Gracey. We are taking things slowly to ensure no set backs!