One

Happy one year Travis!  Thank you for the roses

Chloe

I just wanted to give a little update on my sweet angel. We had another meeting small meeting today and we have decided to leave her here at the hospital so she can continue to get the care she needs. There were questions asked that we could not answer and that I cant even remember at this time. 

I love her so much with all of my heart. The pain that me and Travis are feeling is just unbearable. My soul hurts.  

The Good, Bad, Ugly, Clarify, and To Thank

      First off I want to express to everyone who reads this blog, prays for Chloe and us, sent us good wishes, donations and items for Chloe, as well as everyone who has sent me a little message, or text, that I am honestly truly grateful for all the help and support it has gave us. I want to let everyone know that any donations that have been made, we have been saving and we are using that money to get us a car. We do not have a reliable vehicle to make it all the way to Lexington. All we have is my husbands truck and its only to get him to work and back. And the donations have also helped with gas to and from Lexington. We have been using my mother-in-laws vehicle to go back and forth. I just want to let everyone that the donations have been GREATLY appreciated because we really do need it with the help of getting a car to go see Chloe.

When I was in yearbook we did this thing at the end of the year and wrote a paper called "The Good, The Bad, and The Ugly" and from what I remember the paper what just that, the good the bad and the ugly of our opinion of the yearbook, and how the year went with making the yearbook and things like that so we knew what to improve on for the following year, and I think also it was away for some of us on staff to vent out a little bit, because we loved our yearbook adviser, so we were all bluntly honest.  So Im going to to tell the good the bad and the Ugly of the past week  because I haven't updated in a few days.

THE GOOD

We got back into the Ronald McDonald House, I received a phone call today from them and the Dr and social worker, worked to get us back in there and I am so thankful for that. I pray that the situation that we endured never happens again to any other family. It was stressful for EVERYONE involved I am sure of, So  I am thankful that it was able to be resolved and that is now in the past, and all is forgave. 

Also If I am not mistaken what the the nurse said over the phone, Chloe is down to 24% on her oxygen, I believe that is was the nurse said, but it was a little hard to hear so forgive me if I make a post saying different because I do not wish to confuse anyone.  

My parents and one of my sisters came down over the weekend and that was such a blessing to have them here because it has been since June since I've seen my family, and I still have a brother and another Sister I haven't seen yet since June. Also along with my parents coming down, My friend Jessica came down for a couple days. It was so wonderful getting to see her because she was one of the only friends I really had before I left Indiana. I could trust in her, and talk to her when EVER I needed her, and I still feel the same way about her. What I love is that she doesn't hold  grudge or isn't mad at me because I don't talk to her like I used to. I have times when I want to talk to her, but I don't know what to say. So getting to see her was refreshing for our friendship.  With getting to see my parents and Jessica, My friend Debbie Also came down. She lives in West Virginia now but has family in Indiana and stopped to see us as she was heading back to W.V. from Indiana. It was amazing to see her. I haven't seen her in about 2 years. She was one of the first real friendships I ever had back when I was in middle school. I got to see her daughter also when she came to visit and that was so nice! her daughter Jasmyn as got so BIG since I last saw her. She is adorable. It was so nice getting to see Debbie and having her met Travis and Chloe also. I felt so blessed to have my family visit as well as 2 truly amazing friends come down for Chloe. Also want to Give Jessica a BIG THANK YOU for taking pictures of Chloe, They are beautiful!!!!!!! * Yesterdays Photography as soon I know of her website/facebook, I will post for more information* 

Another good was being able to go to church last night. I got so much help from going, as well as peace in my heart. I feel that now I can go in and face those Dr's and nurses and practitioners with a smile on my face, and know that one way or another, Chloe WILL make it. I have faith that she will make it, If faith can move a mountainous, then faith can cure Chloe. I will say, Each and every day is a battle with everything going on. I have to regain my strength each and everyday. Find my peace each day. I have had countless people tell me that I am so strong and tell me that if they we dealing with this they couldn't handle it. When I get told that, all I can think is really?  because I have days I feel so tired and weak. For anyone who may think that they are not as strong as me and my family, remember, the strength that I have was gave to me from God, the same God who can give you the same strength you need to help with your battles, as long as you pray for his help. And also the Bible says to cast your burdens upon him, So what ever may be troubling you, give it to Jesus, and I will assure you, He will give you peace. He gives me days filled with so much peace because I have gave my worries to the Lord and I have held onto my faith.

THE BAD

The bad my be pretty short because I think some of the stuff is really the Ugly. Ive Been sitting here for a while and cant think of any bad, so I'm going to move onto the ugle

THE UGLY

The Dr said that Cinci said that Chloe as one of the worst cases of EB that they have seen.  It is n.ot her skin that is an issue, but her insides. THEY say that she has multiple organ failure. I have faith that she will come over this, I AM a believing woman. Chloe Isn't what has been so hard the past week as much as the Drs and the nurses. It has been a challenge to go in there and talk to them. It really has because I hear ALL negativity, and not even a word of something positive it seems like, and most of the negativity isn't even fact, as much as an...... opinion I could say, is being expressed. I had a nurse one day get in my face and say something that hurt me very deeply. I'm not going to mention names or what was said, but It honestly Shook me to the core of my soul and heart. And all I could think was, even why you are trying to be honest with someone, no matter what the situation, there are something that just shouldn't be said. I pray for that nurse to  be more careful on the what they say and be more aware of their words and how it may affect me and my family. It also makes me pray that much more and harder that God moves for Chloe and Everyone can see her and be a witness to Gods miracle   

TO CLARIFY 

UK- University of Kentucky Hospital. 

we did NOT go to Cinci, Cinci would not take her case.

When Chloe gets off the ventilator she will be coming home, that is the plan and what the hospital is planning. 

Also a Special Thank you to: 

The Butterfly Fund

The Jordan Light Foundation

The Ronald McDonald House

The EB Nurse in Cinci ;) 

Mollie Walker

Jessica Howey
Christie Zink

Candace Jackson

and 

Anyone who has made donations. I honestly do not know who has made a  donation because Mollie has that organized for me. So thank you from the bottom of our hearts.

Love

My parents have came down from Indiana to be with us here for a few days. Times are hard. They are are going to wean her off the vent so she will be able to come home with hospice. They are going to be doing less labs and sticks to her... We are honestly really confused on what exactly they are doing.... all we know is that we are going to get her off the vent and bring her home. But right now we are waiting for more family members to be here and we are all going to pray for her together. I Love Chloe so so much! They put the vent rate down from 40 to 20 and she is handling that pretty well.

Hmmm

Okay folks, as of 3:11pm we still do not know what is going on. We ran into her nurse practitioner and she doesn't even really know what is going on. We are all so confused and lost and just don't understand, but I will update as soon as I know for sure what is going on.  I believe we are just waiting on to hear from Cinci.... Were told that Cinci accepted her and was ready for and that they wanted to take her there at 7am this morning, then last night they said they wanted to do a conference, so I dont know if they changed their mind or not.... One good thing about Cinci that I know of is, that because Chloe has/had the MRSA, she would have a room to her self!!! Love you and thank you every one for all the prayers and anyone who has made any donations. It means so so so much and is much needed. I love you all and I will try and keep everyone updates on Chloe!!! Shes been getting LOTS of kisses from everyone!

Chloe

     I dont want to type out whole lot because the meeting held a lot of information. So I will just tell a couple of the key things. She is a rare protein loss. The dr said she has only seen it a couple times in babies out of her 40 years of being a dr and those babies did not live. She also is inflamed in her GI tract and liver, and stomach. They are only giving Chloe a ten percent chance. If Cinci can't do anything... UK said they will make her comfortable. 

     I rebuke this. God can move for Chloe... If we have faith bigger then a mustered seed he can move for her... Its so hard to keep faith at times like this... But it is when we need to keep faith the most. God is always with her, no matter what... and me and Travis take great comfort in that..... 

     This is so so so hard.... please pray for Chloe... We are expecting nothing less but a miracle.

 
About the RMH, the hospital is investigating what happened. and to clarify, Chloe got MRSA right after she was 1 month old. It had been in her blood when it first appeared but they treated her. Who ever nurse told them that Chloe was MRSA positive broke major HIPPA violations, and I think that RMH broke some major rules also calling and inquiring about Chloe when they do not have permission. It just seems like I could call about any baby and find out information as long as I say I'm the RMH. I'm angry still. But... Apparently God as a better plan and we don't need the RMH

Because our daughter got MRSA from.the hospital, we cant stay at the ronald mcdonald house.

Chloe is on a vent, and we dont know exactly whats going on. 

Im.very sad and angry right now, i feel like punching  a wall, and to also just go numb. How am i going to see my baby.... my baby girl each and everyday. My heart hurts because i dont know what im going to do if i cant see her. My heart feels like it got stabbed. I love Chloe so much, what is she going to do without me each day. I hurt so bad