Neely's HOME!!!!

Neely came home today! She still has a long road of recovery with lots of therapy of different types, but has such an awesome support system. I can only think by the picture I am including that Neely is trilled to be coming home! The doctors warn that although Neely looks completely healthy on the outside, her body is still healing and repairing on the inside. She still has some swelling inside her brain so she is scheduled for a follow up MRI in two weeks. Christy and Jamie and Ava are thrilled to be back home under one roof. Neely is still taking all the meds she was in the hospital and doctors have told Christy and Jamie to keep visitors to a minimum and to keep Neely out of public places for a few months, due to the immune-suppressants that she takes. We are all so grateful to the doctors and staff at GHS for the care they gave Neely and her family during the 19 day stay. Neely's recovery has been nothing short of a miricle and there is only one who we can think for that.

Go Neely Go!

Good News! Just spoke with Christy and there is a big possibility that Neely may come home tomorrow! She is making unbelievable progress and everyday we get a little more Neely back. Don't really know alot of details yet, but we keep praying that she continues on the remarkable recovery track.

Neely is all settled into the Roger C Peace Rehab Center. New room...new staff...new toys...lots of new stuff to get used to these days. She is extra timid and unsure of the new staff as they come into the room to meet her. The visitation at the Rehab Center is very strict. Visitors are allowed after 4:30pm on weekdays and after 1pm on Saturdays. She will begin her intensive physical therapy tomorrow with Daddy by her side. Christy and Jamie switched shifts tonight. We have no idea how long she will be here.We visited with Neely this evening and are very proud to report the unbelievable and encouraging progress that she has made. Apparently, Dr Honeycutt wrote the order to move Neely to rehab three days ago. The therapists are looking at that old information and expecting to see Neely in that condition when they come in to work with her. Much to their surprise, they see a playful and alert little girl in the room. From following these posts, you know that the past three days have shown exponential improvement.Tonight, Jon and I saw her walking around her room, coloring, playing and laughing with Ava, and eating on her own. Tonight's menu was chicken fingers (by request of the princess) and she wanted to share with us. She asked for dipping sauce and drank all of her chocolate milk. The steroid treatments she has received cause an increase in appetite and will help her gain back the weight she has lost.She has realized what the buttons on her bed can do, including calling the nurse, which she did several times just for a laugh. We see so much more of our Neely every time we see her and we couldn't be happier.

Neely slept through most of the night last night-YEAH! It is such a blessing for her to get the rest that her little body needs. Christy says that she is much more alert this morning and she is looking around the room like she is seeing it for the first time. Christy says that she is a little timid because of it. So it seems that her vision is getting clearer. She says that Neely is trying to speak at times but it is difficult to understand.They have not had to reinsert her feeding tube and they allowed her to rest without her 'snow cap' through last night. I think they are going to put it back on at some time this morning. After a review of her EEG, the Doctor says that the majority of her brain is showing 'normal' activity, but there are some questionable reports showing from the back of her head.Oh behalf of Christy and Jamie and family, thank you! thank you! thank you!, for the outpouring of love and support that everyone has shown this family. Our friends and family have brought food, toys, gifts, cards, research, prayer, encouragement, and love continuously. We are all very grateful!Uncle Potter and Aunt Carrie are going to check-in with Neely-bug this evening, so I am sure we will have more to report then. Some background on Neely's story here.

***3:30pm update on the update***
Around lunchtime today, Neely woke up from a nap and had applesauce for lunch. After lunch, she noticed the Tom and Jerry on the TV. She and her big sister, Ava, LOVE Tom and Jerry...who doesn't?? Christy leaned down about that time to sit beside her on the bed and Neely, still watching Tom and Jerry, giggled her sweet little giggle!!!! The nurse who was in the room at the time, turned to Neely and asked, "Was that funny?" Neely replied,"you can come down too." In Neely-speak, she was asking the nurse to lay with her on the bed too. It was very softly spoken and a little slurred but you could hear those words. Hallelujah! Those five little words are packed with so much hope and encouragement, I just had to share!

***5:30pm***
Christy also told me that Neely clearly had full use and control of her facial muscles and she was able to move her arms and hands a little. I still didn't think we were ready for smiles and laughs...but she just sent this picture! Go, Neely, Go!

Neely's condition has a name now. Acute Disseminated Encephalomyelitis. Her doctors says this is an extremely rare condition that he has only seen a couple of times in his 30 year career. This is how her doctor explains what has happened. When Neely had the stomach virus (now almost 2 weeks ago) it was a tough one. A 4 day virus. Her immune system was on it and came out swinging. Her immune system produced so many overzealous antibodies that they began to attack her brain. I know that this sounds very scientific here, just bear with me, I am not a doctor! Her brain has become inflamed and swollen in patches over her head. This has created those seizure like symptoms that I posted about earlier. To combat this inflammation, they are giving her steroid treatments. We have already begun to see the progress of this treatment. Neely was able to move her left toes, blink her eyes, and make a fist on command. These are huge accomplishments.Currently, she is in PICU at Greenville Memorial. She has a feeding tube and brain monitors all over her head. To keep her from pulling at these monitors, they have wrapped her head in a huge bandage. Her mother lovingly refers to this as her "snow cap." It looks as though she will be in PICU for a few days. We are not sure when she will be able to come home. I will continue to post as we learn more. Thank you all for your thoughts and prayers. They mean so much to all of us.