Update from Gracie's Mommy (Nov. 22, 2011)

Our amazing Grace has now spent 88 days in the Primary Children's ICU. We have been through so many ups and downs, but through it all she continues to fight. The last week has been one of the hardest weeks we have had here. As they took her out of her coma she went through some extreme withdrawal symptoms that were an absolute nightmare to watch! She has also had some amazingly peaceful moments when her eyes have been wide open and she has been taking in everything around her. All we've been able to do is reassure her when can and comfort her constantly. Unfortunately as the medication has left her body the seizures have resurfaced and so we are now trying new treatments. She is still being treated for an autoimmune disorder and today she started plasmapheresis. It will take about 5 treatments, everyother day, before we will be able to see if it is helping with the seizures. We are so incredibly grateful for the amazing Dr.'s who continue to search for an answer and a cure and we are also so thankful for the incredible support and care of the nurses through these rough days. I wish I could say everyone here was deteremined to fight for our sweet Grace but unfortunately we have had to continue to advocate for her to Dr.'s who have given up and that is a challenge I never expected to face at a hospital that's motto is "the child first and always". Yesterday I had a Dr tell me that we are getting to the point of "futile care" for Gracie. It was during the morning rounds, and it was while we were standing at Gracie's bedside. It was the worst conversation I have had with a physician since we have been here. Someone like that does not belong at this hospital!!! Gracie is worth fighting for!! I still believe in her and I believe in miracles!! Please continue to pray for her and send us all the love and support!! We need it now more than ever!! Please continue to post pictures of her, your favorite moments with her, and your words of encouragement. We love you all so much!!!!