Tuesday, March 13, 2012

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.

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 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 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   

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
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.


  1. Your faith has moved me! Two weeks ago I had no idea what EB was or how devastating it is. I stumbled across The Butterfly Fund and every night since then since meeting your precious Chloe and Jax and all the other beautiful butterflies, I have had this pull in my spirit this ache in my heart I have not stopped shedding tears or praying since your remarkable faith along with the many other parents suffering has giving me the overwhelming urge to want to spend time in prayer to be closer to our Lord Jesus Christ When I look at your photos I can feel and see the presence of the Lord all around you! Keep on smiling and I'll keep on praying. Remember that Jesus was also mocked! Glory will be unto our Lord Jesus Christ May the power of the holy spirit pour out upon Chloe May all her painful wounds be washed away by the healing blood of Jesus! Thank you dear Lord God Praise be to you Amen!!! "Again I say to you, if two of you agree on earth about anything they ask, it will be done for them by my Father in heaven.
    (Matthew 18:19 ESV)

    1. Chloe has made me pray more, and because of her I have became Closer to God. I believe God is using her to move in people

    2. Walk by faith and not by sight. Life and death in the power of the tongue. These two ring true!
      Lord, hear our prayers. Glory be to God. Thank You for healing Chloe, we know You are merciful. Thank You for Megan's strength to hold her faith, rebuking against all evil.

    3. Heavenly Father, guide Megan to speak life to Chloe to build Chloe's will to live and fight, for we know Your Will be done. All things are possible through our Lord and Saviour Christ, Amen.

    4. ...Dear Megan,
      14 years ago, I gave birth to my son Noah at 31 weeks. He became ill with necrotizing enterocolitis and had to be put under and ventilated. The hospital thought I was insane when I calmly told them that God is healing my son. I stayed with Noah, speaking life to him, places we will go, things we will do and that God has plans for him. I was rudely told by a nurse that I was making him suffer...if I had given into that, my son would not be here

    5. At the time, I was only 18 and recently introduced to Christianity thru a married couple going into ministry. They told me my faith can bring Noah thru it, that he wouldn't need surgery which Dr said he would need, but they said all his intestines are dead according to tests. My faith was not strong to turn down the surgery, but I can pray God to work thru surgeons. Only. one-third of intestine was dead. I know God was healing my son. Noah is my everlasting testimony of Our Loving God. My prayers are with you<3

  2. Megan, I pray EVERY night for your sweet, sweet baby Chloe! I can see the love that she brings you and your husband. May god and all of the butterfly angel's watch over her each and everyday. I pray for you and your husband lots of strength for that precious baby of yours. My family is also praying for baby Chloe, we will continue to pray for Chloe, you, and your family!

  3. Sending you hugs and prayers from Spain!

  4. Hi Megan,
    I am praying so hard for your baby girl.
    If I could, I would offer to take away some of the pain you are feeling as a mother because I know how difficult it is. I think of you, Chloe and other EB children all the time and pray for them.
    I will continue to pray and ask GOD to bring you peace.