Sunday, November 27, 2011

Friday, November 25, 2011

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!!!!

Sunday, November 13, 2011

The first step to recovery

Yesterday on 11-11-11 during her 11th week in the ICU a miracle did happen!! Our amazing Grace opened her eyes for the first time in 11 weeks, and for a little more then 30 minutes she was aware that we were with her and she interacted with us as much as she could. She followed our voices with her eyes and was able to focus and look directly at us. When asked to do some small commands she responded!! When asked to close her eyes if she could hear us, she did. When asked to squeeze my hand, she did. She then shut her eyes and has been resting pretty comfortably ever since. It was the most amazing moment of my life!! She is still on a good dose of the medication that is keeping her in the coma, but it was a very hopeful moment!! She has still been having a lot of seizure activity, but we have been pretty successful in stopping the seizures with the VNS and with pain medication to help with her kidney stones and other pain she might be having. She is so incredibly strong and inspires me every minute of the day!!! Continue to pray and send postive thoughts!! We love you all so much!!!
 p.s. I just noticed there are 1111 members on our FACEBOOK page!!!

Sunday, November 6, 2011

Update from Gracie's Mommy

 We wanted to give all our amazing family, friends, and supporters an update on our amazing Grace. It has been awhile since our last update and many ups and downs have happened. As they began to take Gracie out of the coma it became obvious to Dig and I and to our incredible nurses that Gracie was feeling pain and that the pain was contributing to the seizures she was having. An ultrasound on Wednesday showed that Gracie has several kidney stones. She went into surgery on Friday to have some of the stones removed and to have stents placed to help the remaining stones pass and to take some of the stress off her kidneys. There are several reasons that could explain her getting the stones, but we don't know for sure the cause yet. We are just grateful that the stones were found and that she is being treated for the pain. It has really helped with her seizure activity. Tomorrow will be another big day for Gracie. She is having an MRI in the morning and she will be having surgery in the afternoon. She will be getting a feeding tube placed in her stomach, a trech in her throat, and a broviac in her chest. This all sounds scary and overwhelming, but it really is a positive step forward for Gracie. After the surgery they will continue to take her out of the coma and all of these things will help her through rehab and recovery. Gracie remains so strong and inspiring!!! She continues to fight everyday and we all continue to fight along side of her!! We have been so incredibly blessed with our nurses over the last few weeks, we just can't thank them enough!! We have also been blessed to come into contact with an incredible family who have been through a situation so similiar to Gracie that talking with them has given us new hope and encouragement. Please continue to send us your positive thoughts, messages, and prayers. We love you all so much, and we are so blessed to have such amazing people in our lives!!!

Saturday, November 5, 2011

Ugly XMAS Sweater Soriee / Fundraiser






It's that time again!!! Time to raid your Grandma's closet and find the most hideous Christmas Sweater you can. Come out and wear it proud because this year it will all be for our Sweet Gracie. I have given you a beautiful example of how to do it right on the event photo. As you can see Dig added some eyebrows to his attire and oh, how it brings out the true craftsmanship in his sweater. It will be $10 at the door which all will go to Gracie and her family. We will have a contest for the UGLIEST and most creative sweater. A BEAUTIFUL trophy will be up for grabs along with a fantastic prize for the 1st place winner!!! We will have Live music from Korene Greenwood and friends. There will also be raffle tickets to purchase. They will be $3 each or 10 for $20. There will be tons of great prizes!!! If you are wanting to complete your holiday season, this is the key!!! Start preparing, get those sweaters now, they go fast the closer to Christmas we get. I hope to see a ton of you there!!!! Please keep Gracie and her family in your thoughts and prayers.