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