After the phone call from Glennon I went from being so happy to Ohhhh CRAP...I have a ton of stuff to do....so the cleaning began. I scrubbed from ceiling to floor and everything in between..every little nook and cranny. Sanitized everything that I could. It was exhausting. From that we went to meet her nurses and do last minute refresher training. We stayed our 24 hrs. and two days later she came home. I rode in the ambulance with her all the way home. I must say for as long as we waited to get her home leaving the hospital was kinda bitter sweet. These people had become a family to us and I was sad that we wouldn't see them much anymore. When we came through the door with Emily there were soooo many people in our house. We had been invaded. We got her all settled in and I began the 2 day struggle to get her prescriptions filled. I tell ya, it was horrible. I spent 2 days literally on the phone arguing back and forth between insurance and doctors and pharmacy. We finally got it done. Thank The LORD!

The first few days with the nurses were exhausting in themselves, trying to get them to understand that she is not in a hospital and that I like her taken care of a certain way seemed impossible. Regardless of what they thought they knew about her, I knew more and I had to make them aware of the fact that this is not my job but my life and that things were gonna have to go my way. It didn't matter what degree they had to me they had only known her a couple of weeks and I have been intimately involved in her care for 2 years. I think it was hard for them to accept that I knew what I was talking about. There came a point after a few days of Sis being home and we had issues with a nurse and I actually had to fire her. She had messed up on more than one occasion and I couldn't chance it. The funny thing with that was the nursing company called after they talked to the nurse and she said I never talked to her about anything that happened. My response to that was they obviously didn't know ME or they wouldn't have even brought that up. YOU BETTER BET I HAD A CONVERSATION WITH HER!

We had our first Holiday together. HALLOWEEN..sissy was a little witch and bubba a giraffe. They were adorable. OF COURSE

Emily has been home a month and things are going great. It's still hard having strangers in your house but it's getting better. I feel more comfortable with them now but you can bet I still watch VERY closely! Sis has adjusted pretty well to being home. We have our little routine down. She is responding to therapy great and at home we're able to put her on the floor and work with her rolling. At this point we now have 16 hour nursing which is a relief to me to have some quality time with her. I take her back every night and give her a bath. Her first couple of baths she didn't know what to think but she's getting to the point where she loves them now. She has a special little lounge chair that keeps her elevated but lets her butt soak in the water. Of course after that I dress her, lube her up with her vaseline, paint her nails and I've been putting her in the living room to hang out with the family for a couple of hours. It's been so nice. Her first week home Bubba was really jealous and he wanted me to hold him all the time, now he's used to her being here and he's pretty good about playing while I'm working on Sis. He loves it when I put her down on the floor he will crawl all over her. She just smiles from ear to ear. He loves hugging on her, it's the sweetest thing to see. Tyler (big brother) loves her being home too. He will go in there and sweet talk her and she will usually grab for his face. I can't tell you how blessed I feel when I see my babies all together loving on each other.

I scheduled a family picture for Monday November 23 and on Saturday Emily thought it would be cool if her G/J button came out (her feeding tube) So we rushed her to Glennon to have it put back in. Of course we sat there for 4 or more hours before they said they would have to wait for the surgery team in the morning. One nice thing was the amount of nurses and staff who came to see Sis while we waited....they said they heard she was there and they wanted to tell her hi. It was sweet but we had to leave her. I told her if she was just trying to get out of family pictures that was too bad. LOL The doctor called me the next morning asking why she was being fed through the J-port so I had to explain all that. He did a test that showed no reflux and consulted with her regular doctor about putting a G-button only back in and attempting to feed her through her belly. I wasn't very happy with it because they have to keep her for a couple more days. I talked to the doctor today and voiced my concerns and just boldly told him not to be trying to make a bunch of changes because she was not going to be staying in there more than a couple of days. Maybe he's never had anyone talk to him like that because he got very quiet. That's ok by me he doesn't have to talk just listen.

So now we are planning on pickin her up on Monday!!