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
Yesterday we started on the road to feeding Fletcher by mouth once a day five days a week. He is officially a part of the 'feeding program' at TCC. The picture below is a picture of his first food tray. The cafeteria will bring a tray very similar to this one every morning for his 9:00 am feeding. I will say that it hasn't gone off without a few 'people problems'. Like I said earlier we started the feeding program on Tuesday, he wasn't 'supposed' to get his normal tube feeding until after I fed him orally (aka PO), well when I got there yesterday he was having his normal 9:00 am feeding! UGH! I did feed him a little bit, it was more for me than for him. Of course, I complained and everyone was very sorry and now there are signs everywhere that tell them to hold his 9:00 am tube feeding. Today when I arrived at 8:50 am again Fletcher was having his 9:00 am tube feeding, when I saw this I will say I lost my cool and I said rather loudly, 'Why is he eating?' Have you seen the commercial about using your debit card and how it makes things go smoother and faster and then there's the lame person who has the audacity to pay cash for something and everything comes to a screeching halt? Well, that's what happened today when I kind of yelled, 'Why is he eating?' Everything and everybody came to a standstill and just stared at me. Again, UGH! If my sweet husband or Kayleigh had been there they would have left the building out of sheer embarrassment. I did feed Fletcher a little bit today but it didn't really seem enjoyable to him. I will admit I was very discouraged this morning. I have been looking forward to feeding him and it is not going at all like I thought it would. I spoke with Fletcher's speech therapist today and questioned if it's a good idea to orally feed him, maybe he's not ready. She encouraged me not to give up and give it a little more time. So, we'll see. As I type this I am in tears I can't express how sad I am feeling over all of this. It is, of course, compounded by a realization I had a few weeks ago. One day someone asked me how old Fletcher was and I told them two and a half and then it donned on me that in December he'll be three! And then I began to focus on the fact that my toddler isn't toddling. I began to focus on all the things he can't do. It's sad I know, but I'm just being really honest here. I've been struggling with this for weeks now. The other day I was in my van all by myself and I was having some prayer time and I began to weep to the Lord about all this and tell Him of my hurts and my unmet expectations. I listed a few things very specifically: I had dreamed of taking Fletcher to school everyday, I dreamed of him playing with Maddie and enjoying his family. Well, guess what the Lord reminded me of? I DO take Fletcher to school everyday it's just not Will Rogers Elementary and Fletcher DOES play with Maddie and he definitely ENJOYS his family. I will say I'm still struggling, but when I do I'm trying to remember all the positive things that have happened with my sweet boy and how much I enjoy being with him. I would definitely covet your prayers for the struggles I'm having and for us to have wisdom when it comes to feeding Fletcher. I want him to enjoy eating. I don't want it to cause any health issues for him just because I have a maternal need to feed him. Thanks.
Comments by: Stephanie
I LOVE YOU!
Posted: 8/22/2007 6:08:00 PM
Comments by: Anonymous
My nephew was somewhere around this age (between 2-3) when they started feeding him orally and weening him off his feeding tube. It went about as well as yours did! He hated it! It ( like breathing) is a lot of work when you're not used to it! But...he is now 14 and eats more with his mouth than I DO! Think for the future, not for today! God will give you the strength you need.
Posted: 8/22/2007 10:24:00 PM
Comments by: janet c
Make up some goop that looks like vomit and then squirt it like that guy in Wild Hogs did (mustard & ketchup????)to make yourself laugh. MY beautiful niece Anna would always vomit for me -I'll tell you, just for laughs, but she had that projectile vomiting stuff, usually aimed right at her Uncle GArrett's pretty face, so I did have to laugh! That I would WANT to kiss that after-vomit face was a real tee-hee. If you need a laugh I really enjoyed that Wild Hogs DVD - nothing saintly or spiritual about it (if so, I don't remember), but funny. And do not feel guilty about felling down recently. You are one of those people who has taught so many of us to live out those p & W songs you taught our children!
I LOVE YOU!!!!! Janet Lalli
Posted: 8/22/2007 10:32:00 PM
Comments by: Kristi
Oh my sweet NeeNee!!! Fletcher is everything and more that God wants him to be. I pray that his mercies are new for you this day and know that you are such a blessing to so many of us. We will be praying for you and for our sweet Fletcher! love you!
Posted: 8/22/2007 11:04:00 PM
Comments by: Susie
Denise, Oh my goodness! I feel so humbled afer reading through your blog for the last 30 minutes. Who am I to ever think that I have struggles when I see all your family has endured. Praise God for your strength and openness to share your progress. Fletcher is a beautiful boy, and I feel so blessed to now be a part of his life through this blog. You have encouraged me with your wisdom and faith in God. I am praying that your dream comes true and you will one day see all that you envisioned. God bless you sweet mommy, and keep fighting the good fight.
Posted: 8/23/2007 9:11:00 AM
Comments by: Michelle
Well CRAP!! :-) That just stinks, and that's just OK that you feel the way you do, you are his mommy and when things don't go right with our babies it makes us cranky!! BUT I DO know that God knew that you were the perfect mommy for Fletcher and he was your PERFECT little boy. You are an inspiration to me and make me strive to be a better mommy to the girls. We have been friends for more years that we can count and I love you more than you know! Even though I am not there physcially I am always with you in spirit! (scary huh!!!) I hope you have a better day today and know I love you more than my luggage!!!:-)
Posted: 8/23/2007 10:48:00 AM