For the next several months we called on all of our friends and family to pray for Emily. I think this entire town and all it's churches were praying for this little girl. Doug had called an old friend to update him on Sis and him and his wife drove the two hours to pray with us. It was good to have someone who had so much faith when we were running low. They really raised our spirits and gave us renewed faith. As the months wore on she was getting no better, at some points they had to actually paralyze her to keep her from fighting her vent. Of course there were more conversations with the doctors about keeping her alive like the one I had when the doctor said what measures do you want us to take to keep her alive. I remember telling him you better do whatever you have to do to keep her alive. It was heartbreaking to keep hearing that I would never take my daughter home, that I would never put piggy tales in her hair or plant flowers with her.

In the midst of all this we found out that Sis had maxed out her lifetime on our insurance through work and the only way for her to get medicaid was for me to quit my job. They have denied our kids SSI because of what they call resources...it is sickening to see so many people on disability for a "back injury" and yet to see them lifting bundles of shingles. When our kids' disabilities are proven. They are both blind with heart problems, he has short gut and she has asthma....how they feel they can deny my kids is beyond me. I cannot wrap my brain around their reasoning. So basically I asked them what we need to do to get ANY help for our kids. Are we supposed to both quit jobs loose everything we had worked for, for our family, maybe go on welfare and then maybe they would help us. I will say that there is no help for anyone in our situation that has had a crisis in their life and are making it by ok but need some help. NOTHING!!

Some days she would do ok, others we would think it was a turning point that maybe she could pull out of this and there were the days that the doctors would have that talk with us. I can't even describe to you the pain that WE were in. I think in November and December of 08 were the absolute worst times for all of us. It was never good to walk in to see Emily and have a room full of doctors and nurses surrounding her. We knew that she wasn't getting any better but we were not about to give up on her. A friend of ours at the hospital kept telling us that "we would know when it was time to let her go" and to this day I have never felt like that. We had walked in her room late December to see a room full of people. The doctors had begun to tell us that Emily was maxed out on oxygen and all her meds. and that her kidneys had stopped working. At that point they asked us if we wanted to do dialysis on her if it came to that. Doug and I went to the prayer room with Wendell (one of the chaplains) and cried and prayed and talked it over with Wendell. I was adamant on not putting her through dialysis. Doug just kept saying I feel like we're giving up on her, why do they keep telling us to shut her vent off and let our daughter die?

When we went back to Sissy's room I remember leaning in right next to her ear and whispering to her "if you are ready to go, if you are too tired to fight anymore mommy won't be mad. I want you here with me but if you need to go than I will let you but if you want to stay you have to keep fighting and I will fight for you until my last breath. You tell mommy what you want."

Doug and I went to a hotel I think, I don't even remember. I do however walking in her room the next morning and the doctor came in and threw his arms in the air. He said I don't understand your daughter, she is a mystery to me and I'm not going to predict anything about her again. She had started peeing through the night, they had come down on all of her sedation and on her oxygen. It was a miracle and she was telling me not to give up on her!! I knew then that my daughter was coming home at some point.

January and February were good months for all of us. Emily continued to do well. She had some bumps but they were minor compared to what she had overcome. In March they thought that she was well enough to take out of ICU. But the doctors and I wanted her to have 1 more surgery to put in a G-button (feeding tube). So early March she had her feeding tube put in and another procedure called a fundelplycation (that was supposed to help with her acid reflux)

During the beginning of March Bubba also got sick. His gut was hurting him bad. I had been telling the doctors that his abdomen had been hurting him simply because he was always doubled over and crying. He never cries. I fought them for about a month with 3 different doctors seeing him and 2 emergency room visits. Finally he had a cardiology apt. and he was in so much pain I told them I was not leaving until they could figure out what was wrong with him. They might as well admit us. And they did. They took him off food and gave him IV fluids to give his gut a rest and he started doing a little better each day. Meanwhile I was running back and forth from his room to Sissy's room. Luckily they were on the same floor. So after a week and a formula change Dougie came home and Emily was doing great after her surgery.

It wasn't a few days later I took Dougie to his pediatrician and found out he had pneumonia. So that was another week but at the hospital here. It was a rough month. After that he is unstoppable. Learning something new everyday. Sis made it to TCU about a week after her surgery. She continued to get better and then one day I heard the doctors say I think it's time to talk about getting her home. We had kinda talked to a friend of ours that suggested a rehabilitation place called Ranken Jordan. It seems to be a great place and we decided to send her there for about a month simply for intense therapy.

A few weeks there and she didn't tolerate it very well she ended up in PICU two different times. So Doug and I decided to just bring her home. We got all of our nursing in place and ordered her equipment for the house and I guess that kinda brings us to today!!!!!!

Today our daughter has been ready to come home for about a month and we cannot find anyone to supply her with the 1 essential thing that will allow her to come home. A home ventilator. In 30 years of service at Cardinal Glennon the social worker said she has never NOT been able to send a baby home for this reason. We have called EVERY medical supply company in 3 states and not 1 of them will give her a ventilator. I am so furious that she has fought sooooo hard for this moment and she now has to stay in the hospital until someone will help us. The excuses we get are that they only allow 4 patients for 1 respiratory therapist or that we live to far or that they won't cross the state line. And not 1 of those is a good enough reason for my daughter not to be able to be with her family after 2 years of battling death. I've tried to get the state to step in and maybe hire a therapist so that our local company will hopefully supply a vent. They said their hands are tied. What do we have to do to be able to get our daughter home???