Update January 26th, 2012

I am so sorry that I have not posted an update on our amazing Grace sooner but the last few weeks have been extremely stressful and it's been hard to find even a few minutes to get online. Gracie began to have seizures again, only at night as she is trying to fall asleep. This has been so hard to deal with because her poor little body needs rest right now more then anything and the seizures were making it impossible for her to sleep. She would only be a sleep for a few minutes and a seizure would wake her up. She was going days on no sleep and of course the increase in seizure activity had us all very concerned. They tried to put her back on the sleep meds she was originally taking but it did not help. They modified her seizure meds, but it seemed like the seizure were just getting worse. We decied that repeating the plasma pheresis was the best decision so Gracie went into to OR last week to have a new line placed and began to have the pheresis last Wednesday. She has had 5 treatments so far, and should have her last one on Saturday. She had been having anywhere from 20 to 40 seizures per night and last night she only had 2. We are feeling very hopeful that we are getting back on track. Tonight she is having a sleep-study done to make sure that sleep apnea isn't contributing to the activity. The good news is she has still been able to stay in the NTU during this time and has been able to continue with her therapy sessions. She is getting stronger by the second. Gracie is talking more everyday, she has been reading, and has even began to walk with little assistance. I am still hopeful that we will be able to take her home by the end of Feb. I can't believe we have been here 5 months. We are both so ready to be home and to work on her rehab and recovery from there. The last few weeks have been so challenging and I really appreciate everyone being so supportive and sending me so many kind words and prayers. We are getting our Gracie back a little more everyday and I feel so blessed to have such an incredibly stong little girl. I will try to post some more updates over the next week. Love you all so much.

I also wanted to give a quick update on our incredible Allie and let everyone know what an amazingly loving and supportive sister she has been to our Grace. She has had to deal with so much over the last 5 months and I am constantly blown away by her maturity and selflessness. I can't thank my sister, Amy, enough for all that she has done for Allie. She has taken in a third child and has given Allie such a loving home to be in during this tough time. We are also so lucky that Allie has the greatest second grade teacher on the planet this year. Ms. Coleman is exactly who Allie needed to have this year, I don't think Allie would have made it through this school year without her.

Over the last few months I have really learned the power of positive thoughts and prayers and I wanted to ask everyone to send those thoughts and prayers to my beautiful Mom. If you didn't know, she has been battling cancer over the last 8 months. She is currently in her 2nd round of chemo and her strength is outstanding. I have no doubt where my amazing Gracie gets it from. She is the greatest Mom/Grandma/Person I have ever known. Our family will get through all of this, and we will be stronger then ever!!

Love you all so much!

Mindy

A mothers question...

Mindy wrote today,

"I have tried so hard not to focus on why this would happen to my sweet little girl, but over the last week that is all I can think about."

Please, I am begging everyone to continue to pray for Gracie and her family. I want Mindy to know how strong she is and that she is one of the most incredible mothers in the world. She has not been home since the day Gracie went to the hospital, which will be exactly 5 months tomorrow. Please pray for comfort and strength. Gracie has a long road ahead of her but I know in my heart she will overcome this 100%. She has proven, to everyone that ever doubted her, what an amazing, strong, determined/stubborn and powerful GIRL she is. We love you Hinds family!!!♥♥♥

Prayers needed...

Gracie has had a terrible night, lots of seizure. Please pray for her today.

Gracie still fighting.

Gracie has really been having a hard time with seizures at night. Last night she had seven seizures. She has still been doing great during the day and continues to rock her therapy sessions. They are going to alter her meds and do a sleep study this week. If we don't see improvement she may need some more plasma pheresis. I will keep everyone posted. Love you all.

                                                            Mindy

Update from Gracie's Mommy

Gracie with a very sweet therapy cat.

Gracie has had a rough week. They changed her sleep meds and now she is having seizures while she is falling asleep. She is still doing great in therapy and we are hoping by putting her back on her sleep meds the seizures will stop. Please continue to pray for our amazing Grace.

                            Mindy

          

 

 

Another Newspaper Article...ROCKSTAR!!!

 Click om the link below to read the article about Gracie's road to recovery!!!


9-year-old Syracuse girl recovering from coma

Another step closer...

Yippee her trach is gone and Gracie is doing great without it. Everything went good in the OR. They removed some scar tissue in her throat and they are hoping this will help with her speaking and eating. We spent 24 hrs in the icu and then they transferred us back to the ntu. It was great to see everyone in the icu but I honestly dont know how I lived in there for 100 days. Gracie seemed so happy today and I know this is just another step closer to bringing her home. Thanks for all the continued prayers and support. Love you all.

                                                             Mindy

I am so proud of both my girls. They are so strong and inspiring.

Race for Grace 5K and Carnival

I just wanted to share this amazing video that was put together for Gracie and her family. My brother in law Andrew Giannitrapani created it for Mindy, Dig and Allie to have forever and most importantly, when Gracie awoke, she would be able to see how many people have supported her and how many lives shes has changed. I thought everyone would love to see this. Prepare to cry and be moved. Looking back at this day and seeing it on film, I realized what an incredibly beautiful day it was and how much positive energy filled the air. It was a day that will stick with me forever. Thank you to everyone who had any part in putting this unforgettable day together. We ♥ you Gracie. Forever we are all in debt to you and your family!!! ♥♥♥

Amy Miller

(Before playing this video, go to the bottom of this page and pause or mute the playlist music.)

Gracie with her BF Annie the Therapy Dog

Gracie's big smile.

Update 01/02/2012

Gracie had a really rough day today. She was super aggitated, vomitted a couple of times and had a seizure. It had been a week since her last seizure so we are staying positive. Tomorrow she will go to the OR to have her trech removed. This is such a great step in the right direction, but unfortunately we will have to return to the icu for recovery. We should only be there for 24 hrs and then we will be back to the ntu for more rehab. Please continue to pray for her. Love you all.

Bringing in the New Year!!!

Gracie got to leave the hospital for 4 hrs on Sat and Sun this weekend. We took her to the Aquarium on Sat and to the new Muppet Movie on Sun. She did great with both outings. It is so nice getting her out of the hospital.

Gettin her hair did!!! (12/30/11)

Gracie got some killer pink and blue highlights thanks to my bf!