First MAJOR Spacing today!!!

Well... Gracey had her checkup with Dr. Punaro today and she is officially spaced to one IV round per month (solumedrol and IVIG)! Gracey has been progressing forward and we've noticed her rash has finally started to dim over the past two weeks as well as no muscle weakness. Wow - did Gracey really work hard on the physical test!!! Her previous score was 43 out of 52. We were hoping she would be able to hold her head up this time for at least 60 seconds which would push her final score up a point. But Gracey did much better. Not only did she exceed the 60-second mark but she went a total of 78 seconds. This and a couple other improvements pushed her final score all the way to 48 out of 52!!! Sorry for all the exclamation points - but it's very exciting... The physical therapist said a little girl Gracey's age should score 49 to 50 under ideal circumstances. YEA GRACEY!!!!

As I said Gracey got her first major spacing of the IV's today. Before today Gracey got IV solumedrol every two weeks and IVIG every four weeks. Meaning every two weeks one IV medicine for three consecutive days. Every four weeks a second IV medicine, IVIG, was added on day two and three. These are the long ones - 6hrs/day for IVIG then add 1.5 hrs/day for the solumedrol. Now that the drugs have been spaced to every four weeks Gracey gets three weeks between IV pulsings. It's taken her 8 months to get this far and it is a very good sign. Her dosages were increased slightly on both IV meds (more details later) resulting from a small weight gain. Spacing the meds was a goal and a wonderful point to reach but we will be watching to see how her body and the JDM respond. This is an important phase - backing off the meds and letting her body (immune system) handle more load. Time will tell - please keep Gracey in your prayers!