Amazing Grace
Today was truly an amazing day for our Amazing Grace!! She went into the OR this morning to have her stents removed and to have her remaining kidney stones cleared out, which went extremely well. We are hoping that this will take care of the uti's she keeps getting and help with the pain she was having while passing the stones. She then had an amazing session with speech therapy and physical therapy. The progress she has made in the last week is incredible. She is getting stronger everyday and even though she is still having a lot of seizure activity, she has even the most skeptical doctors feeling hopeful. Today we were able to get her into a wheelchair and take her for a ride around the ICU. It brought tears of joy to so many eyes around here. Gracie took it all in and even waved to everyone like she was in a parade. Saturday will mark the 100th day we have spent here in the ICU but it looks like we may be out of here soon after that!! There was talk today that we might be able to transfer to the NeuroTrauma Unit on Monday. That would be a big step forward in Gracie's long road of recovery!! Please continue to pray and send your love and support!! It means so much to us and I tell Gracie about it all of the time. I will post again this weekend. Love you all so much!
Mindy Hinds
Hi,
ReplyDeleteI am not a doctor but noticed that Grace's illness sounds at least similar to anti-NMDA receptor encephalitis, also called NMDARE. It is an autoimmune illness that seems to be increasing in young children and also young women, though males can get this, too.
Some articles here:
http://www.flutrackers.com/forum/showthread.php?t=144172
A specialist that does consultations, I think:
http://www.med.upenn.edu/ins/faculty/dalmau.htm
Family support group. (If you don't mind joining Facebook.)
http://www.facebook.com/groups/ANTINMDARE/
Hoping that Grace is feeling better soon!