Burns Family Blog
Fletcher's mother sent out e-mail updates to our friends and
family in order to keep everyone up to date on what's happening.
On January 20, 2007 she started a Blog.
Here is a backup copy of that Blog.
Last Updated: 11/29/2007
Well, I've been putting off posting about this for nearly three weeks. I am still struggling with the results of Fletcher's MRI and I am really not sure that I understand what's happening to my sweet boy. It's one of the main reasons I stopped to blog about the Lord's faithfulness because I needed to remind myself of all that He's done for Fletcher thus far. One of the first things that the MRI showed is that Fletcher has bone overgrowth in his skull. The overgrowth has 'obliterated his para nasal sinuses', now we know why his nose runs constantly. They are worried now about his optic nerves and his ears wondering if the bone growth will cause hearing and sight problems. They do not know when or if the bone growth will stop. And the hardest news of all...the MRI also showed that Fletcher's brain has atrophied. I just don't get it. I have just recently let my guard down about my dreams for Fletcher's life. He is tolerating (very well) the weaning of steroids, methadone and valium. I honestly thought our next big thing would be conquering the ventilator, knowing that could take years, but that was okay with me. But now, his future is uncertain. I guess it really always has been just like mine and yours. Two weeks ago we went to the dermatologist, he's one of the few doctors Fletcher has that knows anything about Epidermal Nevus Syndrome (ENS). When he was reading the MRI report he told us that all this goes hand in hand with ENS and so does the phosphorus problems. Wherever the nevus is the overgrowth of bone can happen, well most of the nevus is on sweet Fletcher's head, thus the misshape of his head. Also they believe his eyes are protruding because of the bone growth. At this point, no one really knows what to do, so they are researching and educating themselves on ENS. We are working with Fletcher's endocrinologist to help get his electrolytes back to normal. The dermatologist is seeking the advice of one of his colleagues to find out how we can help Fletcher and maybe have some kind of idea of what to expect. We are also waiting for a meeting with the neurologist to see what he has to offer.
As I'm sure you can imagine my heart is breaking. I'm struggling with how to pray. Do I pray asking the Lord to stop the over growth of bone? I know He can do anything, but will He? I'm afraid to ask. I'm afraid to pray for His perfect will, because I'm afraid it won't be what I want for Fletcher. I keep having these conversations with myself. Telling myself that perfect love cast out all fear, telling myself that His ways are higher than my ways, telling myself not my will but Your will be done. But still I'm afraid. I'm afraid of what the future holds for Fletcher. When they gave me the news about the MRI I said to myself, 'this is the worst news EVER!' Then I reminded myself that the worst news ever would be Fletcher not being here with me. Please pray for Fletcher and for Craig and me. We've decided to just enjoy Fletcher and take each day as it comes. That's all we can do for now. He's such a sweet boy. Today I took a few pictures of him while he slept. Craig also took a picture of him playing tonight.
Comments by: Anonymous
we love fletcher and all the burns family...and will continue to pray to our savior for his favor.
Posted: 12/11/2007 9:27:00 PM
Comments by: Anonymous
Denise, I have just read your latest update, and I cannot imagine what you must be feeling at all. I am more sorry than could ever express, and no, I do not feel sorry for him. I mean,
I am sorry for the situation you find yourselves in. I am sure you have heard all of this before, but I have to say that I wish there something any of us could say to relieve your pain. I guess the next best thing would be to let you know, with all of our hearts, that we love you all very much and pray for Fletcher constantly. I also pray that you and Craig will find the answers you need in the Lord.
Posted: 12/11/2007 10:16:00 PM
Comments by: Anonymous
Denise, I am praying for you and your family. Fletcher is such a gift, when I look at Him I truly see the face of Jesus! Take joy in the joys of today, and remember that the Lord is on the job and loves Fletcher more than we could ever imagine. May the Lord's perfect peace be with you.
Posted: 12/12/2007 8:15:00 AM
Comments by: Kristin's Blog
Keep up your extraordinary faith. We love Fletcher so much and are thankful that he has such a wonderful family.
Posted: 12/12/2007 10:50:00 AM
Comments by: Anonymous
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express.
Posted: 12/12/2007 11:41:00 AM
Comments by: Kacie
I'm so sorry to hear all of this - it literally broke me down. I can't even imagine what you guys are going through -- but I want you to know that we love you guys so much and we really hope for the best! I also can't imagine how to pray for something like this .. because like you said - God might have something else in store for lil Fletcher but all you can do is take it day by day - and love him while he is here (just in case!) He is an amazing baby -- and he has been so strong through ALL of this, let's just hope he stays strong even longer! I am praying for you guys and I'm sure we ALL hope to hear good news very soon! Love you guys!
Kacie & Zach.
Posted: 12/12/2007 2:28:00 PM
Comments by: Uncle Randy
If you pray 95% for a cure or an action from God, don't expect a 95% answer.There is a song I had on an old 8 track that said to lay it all at the feet of our Lord and HE will mend all. I know it is very hard to put yourself all in and not worry, you are a mother you know, so that is normal to worry. Put Fletcher at HIS feet and allow HIM to have your son no matter what. HIS love is greater than anything else, and I know you know that too. We can give advise all day, but until I walk in your shoes, I really can't say how I would react either, however I would hope that there would be the loving people like you have around your family to cheer me onward also. Denise, trust in your LORD GOD, and never fall away, he will be with you and your family and Fletcher shall be whole in all of our eyes. Our prayers and love go out to you all. Love, Uncle Randy and family.
Posted: 12/12/2007 5:28:00 PM
Comments by: Melody
I work with Amy at Baptist. I often felt like you do, I would not know what to ask for when I prayed for many of the infants and children I cared for. I didn't know what was best for the child and family. My solution was: God, you know what is best for this child. Please be with him/her and the parents, let them feel your comforting presence, and do what is best for ________ (patient's name). I know many others say simular prayers. You and your family will continue to be in my prayers. Melody
Posted: 12/12/2007 6:29:00 PM
Comments by: Millie
Just got back home and the power back on and checked in on you all. I am so sorry to hear what is happening but I DO know your heart and I DO know God DOES have a perfect plan for our sweet boy and we have to trust in that. I love that sweet angel sleeping, so beautiful and peaceful. I know you are scared and I wish I could be there to love on you and make you laugh (and you KNOW I could!) but I do love you so much and we pray for you guys every day! Just TRUST, I know you do and I am going to stand in the gap when you don't think you can! My love to you all!!!
Millie and Fam
Posted: 12/13/2007 2:58:00 PM
Comments by: Sniz
I am so, so sorry, Denise. My heart is soo sad for you. Thank you for the update and the pictures...I love his hands and fingers so much.
Posted: 12/13/2007 5:16:00 PM
Comments by: Miss Kayleigh
Hey mommy I'm sorry! I think that he will be ok thiough! We can just start praying for that now at night time! Hey you know how we always say that if I or Maddie pray for it then it comes true well hey well try it on this! Haha! I ? you!!!!
Posted: 12/13/2007 6:29:00 PM
Comments by: Miss Kayleigh
this is maddie i love you mommy!
Posted: 12/13/2007 6:31:00 PM
Comments by: Susie
I was having a few tears during your post, and now I'm sobbing reading your sweet Maddie's comments. I just want to say that I am so sorry that the MRI went the way it did. I know you must be devastated. Your honesty in this post is so real, and God wants us to get real with him. He knows we are going to fear, and that's why he tells us "do not fear for I am with you". God looks at our hearts, and you have showed faithful to him throughout everything I have ever read at your site. That is some righteous living girl! Just do your best and keep trusting God! I know he will get you through. I know I always say this, but YOU are such an inspiration to me. Blessings and prayers!
Posted: 12/14/2007 8:55:00 AM
Comments by: Dawn Louise
I love you very much!
Posted: 12/14/2007 5:11:00 PM
Comments by: Kari Moroz
Denise, I'm crying as I read this because as a mom I can't imagine. I'm sorry we haven't been more supportive through this whole process, we do love you guys and pray for you all often. Please know that God's heart is breaking for you, He has a plan and I know He will see you through. Fletcher is a miracle and will continue to be. I remember the first time I saw him at Mom's Bible Study and I told you he was beautiful. You were so worried about his future that day, I remember it like it was yesterday. I remember our fear over not knowing if he would live till today...and here he is. What a blessing. He is still beautiful, Denise, but I know you need no one to tell you that. What a precious boy! I thank God for you and sweet Flecther and the inspiration you have given people through this blog...BIG HUGS!
Posted: 12/15/2007 10:18:00 AM
Comments by: Kristin's Blog
I know I have already left a comment, but I was looking at that sweet picture of him. He is so precious and beautiful. God never makes mistakes...Fletcher was created exactly the way God wanted him to be. He hand picked him just for the Burns family for a reason. Give him a big slurpy kiss from me.
Posted: 12/15/2007 8:41:00 PM
Comments by: Ashley
I know you don't know me, but I wanted you to know I am praying for you tonight. My heart is breaking over your broken heart because I know first hand the place you find yourself in right now. My sweet Ashley has an uncertain future as well, and as mommy's our hearts ache for them. Please KNOW you are being thought of and prayed for. I love your sweet boy and I love knowing that our Father gave him such an amazing mommy. Somehow, someway He will give you the strength and the faith you need. You are loved from afar. God bless. Trish(Ashley's mommy)
Posted: 12/15/2007 11:15:00 PM
Comments by: paula
I Love YOU! And I want you to know that GOD LOVES YOU and Fletcher MORE!!!!! "But the Lord is Faithful, He will make you strong and guard you from the evil one." 2 Thessalonians 3:3 NLT Trust in Him! "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11 NLV And God's will is to heal Fletcher...Jesus died for our salvation and healing... "But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed." Isaiah 53:5
Love you soooooo very much!!!
Posted: 12/17/2007 10:41:00 AM
Comments by: Carol & Sean
I am humbled and crying over what your girls feel for you and their brother. Fletcher is such a special gift to us ALL this Christmas. I love you so much and am continually praying and holding your family up to HIM! We love you so much! I am air-hugging you right now all the way from bixby.
Posted: 12/17/2007 2:44:00 PM
Comments by: oda41143 Missy
My son also has EN, but has not actually been diagnosed with ENS. Love your son, be proud of your son, don't be ashamed. We have one of a kind children. There is an online yahoo group for support if you are interested. EN is a very hard thing to deal with as a mother, do not feel guilty for the feelings you have. I believe that my job is to teach Cooper that he is no different, that nobody walking this earth's surface is perfect. I've also told Cooper that he has superpowers because of his birthmarks. So far, he believes me, but he's only 4. God be with you and your BEAUTIFUL baby boy.
Posted: 3/12/2008 6:26:00 AM