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
I walked into the Center yesterday and Fletcher was sleeping with his rag over his face and the first thing I noticed were his feet. His bare feet, he always has socks on so I was taken by these precious little God given treasures! The second picture is of me holding his tiny feet when his was just five months old. Too precious! Thursday we had a Patient Care Conference (PCC) for Fletcher, PCC's are scheduled every ninety days. They are an informative meeting with the pediatrician, nurse practitioner, head of nursing, nutritionist, PT, OT, education, speech therapy, music therapy, and our social worker. Everyone goes around the table and gives us an assessment of the past ninety days. Fletcher is doing well, he hasn't made very many gains but he was sick for awhile and the Center seems to be short-handed right now so he's not really (in my opinion) truly getting the benefit of all his therapies. Our PT filled us in on Fletcher and said he had made no gains this assessment period and also that they would no longer be working with him in the gait trainer (basically a walker). I can not remember her exact words, but what Craig and I heard was they would no longer be working on helping Fletcher to walk. It took a moment for it to soak in and I finally said 'wait a minute, are you telling us that Fletcher won't walk?' And she said something and then I said,' EVER?' To which she said she didn't know the answer to that question. I will say I felt like I had the wind knocked out of me. I began to cry and I tried desperately to keep my emotions under control. You know, Craig and I have a lot of questions that we're sometimes too afraid to ask like, will Fletcher walk, will he talk, will he breathe on his own? Thursday was the first time we ever heard those words spoken out loud. It was devastating to us. Anyway, this lead to a lot of drama and miscommunication. I believe we have worked it all out and that we're on the same page. His PT told me a lot of different things have to happen before we can even begin to work on walking. She told me it was her goal to maximize Fletcher's potential. She was not the one who started him in the gait trainer and she believes we put the cart before the horse since so much more has to happen before he's ready to walk. Every morning Maddie and I have prayer time together and we ALWAYS pray that the Lord would strengthen Fletcher's neck, back, legs and lungs so he can do what he was created to do. Would you all mind praying that with us?
Comments by: Sniz
What an extremely touching post. You did such a wonderful job of expressing your heart that I could clearly feel myself in your place, full of love and pain for your child. Oh, Denise, my heart aches for you and Craig. And Fletcher. I WILL be praying.
Posted: 10/6/2007 9:23:00 PM
Comments by: janet c
Freak out. I'm glad you settled down to hear that many things have to happen before walking can happen. And then your prayer for his neck, spine, etc. You're right, prayer focus on that together should be first. I'm going to get my boy Garrett Michael to focus more on Fletcher. I love you so much!
Posted: 10/6/2007 10:27:00 PM
Comments by: janet c
Do you remember the story I told you about Garrett MIchale? He was "slow" to talk, individual words were fine, but putting them together didn't happen easily of often. His first "words/paragraph" was a prayer of healing for a mother dying after giving birdth to twins. And, yes, she was healed!
Posted: 10/6/2007 10:36:00 PM
Comments by: Catherine W
Oh, I love those precious little feet! I was wondering how your care assessment went! The girls and I will be praying for Fletcher. I really want that for you all and for all of us at TCC who are going through the same hardships! I loved your entry tonight! You have a wonderful way of expressing yourself Denise! I wish I had that!
Posted: 10/6/2007 11:05:00 PM
Comments by: Susie
Don't let words affect your hope. I remember wondering if my son Seth would ever walk after reading some horrible things about CCD children, and listening to our PT at the time. I will never forget his first steps at 18 months, and the delight at the answer to my prayers. I know Fletcher's situation is so different, but we serve the same awesome God. I will join you in prayer. Take care and stay faithful.
Posted: 10/6/2007 11:15:00 PM
Comments by: Anonymous
Ooh he is so precious!
Posted: 10/11/2007 11:30:00 AM
Comments by: Kevin and Elizabeth
Those feet are so beautiful!!! We are praying for you guys. God is sooo good.
Posted: 10/11/2007 1:33:00 PM