As the pneumonia fades

I think we can officially say we are over the worst of this pneumonia! Today we did a neb shortly after she got up and then not again until this afternoon! Huge progress. My mom and I went to a store after church today and we commented on how different a week ago was. Last Sunday she was dazed. She did not make eye contact or smile. This week she smiled when we showed her Christmas dresses. My jilli bean is coming back to being herself. I'm not sure what was up with her at 3am today. She was screaming off and on for over an hour. It was very unlike her and she acted like she was in pain but with the help of grandma she went back to sleep. Something's with Jillian we will never have the answers to, and as long as she does not start screaming like that again tonight, I'm ok with not knowing why.

As a tubie momma I deal with many things that people would consider gross. To me it is normal. Many days we have explosive laxative poop, I will catch vomit with my hands, feet, clothing, ect, I change her g tube pad that is full of drainage daily, and many more odd gross things that don't really bother me. There is one thing that grosses me out. I think it is more to do with a texture then what it is. As we were leaving target today I picked Jillian up to get her in her stroller and she was soaked. I knew we had changed her diaper just a couple bourse before so it was not likely it was pee. I felt around and realized her g port popped open. It must have been open for a while because she was soaked. Her diaper was sagging from all the liquid and her clothes were almost dripping wet. By Just picking her up and moving her to the car my shirt and hand were very wet. This is my gross point. We took her to mom and dads and we both changed. Oh tummy juice, how you burn on skin!

Today we were talking to someone that we had not seen in our family in a few years. They were someone that our family use to spend a lot of time with. We were talking about the last year of our lives. I think it is kinda overwhelming for people to hear the overview of Seth's and Jillian's year. People just don't know what to do. But it's ok. It has been our journey. It is our stuff and everyone has their stuff. Our crazy journey. 

Jillian is getting so close to talking. She is really starting to mimic people. When she gets mad she yells "mom" and today my mom told her to say bye bye and she said " bye bye bye bye bye" we are going to have a talker soon. Right now she loves to make clicking sounds with her tongue and blow raspberries. She is still struggling with hearing low tones but we are still hopeful that she will develop that on her own. 

On a note that is discusting to many people, Jillian's poop is more and more red. I think it had to do with the meds she is on, at least I'm hopeful that's all it is. She also has a yeast infection in her diaper area again. We started to treat it with prescription cream again. Hopefully this time it is easier to get rid of. 

I want to thank all the amazing people in our lives. The people who have the supporting words and kind actions. I don't say thank you nearly enough! We are so blessed. Blessed by people that without this journey we probable would have never know. God uses situations and people to come together and lift each other up while praising HIM. The long nights would not be the same without the encouragement we get. Every Facebook comment, random hug, text massage, blog comment, encouraging word at church or just asking us how we are means so much to us. It reminds us we are not alone. So many of you show us God's kindness and many times have pointed us back to Him in this journey. I would love to say we have always relied on Him like we should but we truely thank those of you who have reminded us where hope come from. God blesses His children much more then we ever deserve but He loves us and out of love blessings come. 

I don't know how to walk with my new toy yet but I'll stand behind it.  :)